I have met so many mothers with the same story to tell. I feel very fortunate to have this forum in which to voice my story and some of those I feel important to share. It's no accident that I have met some wonderful mothers along the way and they have taught me more than I can say. My hope has always been that I would be able to reach just ONE person. I felt that my mission would be accomplished if even one person was helped by my struggles. However, I have exceeded my expectations and I have reached dozens of mothers who are struggling and have no other place to go. In the process I have also learned so much and recently I had one of those "light bulb" moments. The following story could be YOUR story. Nonetheless it is a true story.
We take it for granted that we live in the United States of America. It's truly a land of freedom and hope. As long as we work hard and try our best, we can expect great things. I recently spoke with a mother who is from a foreign country where children with disabilities are tolerated, at best. She explained that they don't offer services in the schools and basically treat them like any other child. If they don't get it... they just don't get it. There is no "special" treatment at all! Parents are often embarrassed and have no other place to turn to for help. It's a fact of life that she doesn't want to even consider for herself. Right now she is here where things are going great, and she can potentially receive any and all services her child needs. However, that could all change in a blink of an eye. It's too much for her to bear. It's truly too much for ME to even think about.
No matter how much we may complain about the quality of services or the amount of services offered in our area, at least we have the opportunity to receive some help for our children. We have invaluable resources at our fingertips. Many services are free of charge and it doesn't take a lot of effort to receive them, in most instances. For the most part, our society does not shun others with disabilities. I see young men and women with disabilities working in various capacities and living independent lives. There is also HOPE in our country for parents. That is such a big deal. Without hope there would not be advances in treatments and services. Parents would just give up and probably resort to putting their children in asylums or possibly abandoning them at an orphanage doorstep. That is a reality in some countries.
As we celebrate the holidays, let us all give thanks for the blessings we have in the U.S. Let us not forget the people who have given up their lives for the freedoms and rights we have today. Let us not forget the miles we have traveled and the miles we have yet to travel. Let us not forget the past... lest we repeat it. As we begin the year 2010, I pray that we keep the spirit of Christmas in our hearts and that we try to always think of others before ourselves. I have learned that small things truly make a difference in others' lives. It doesn't have to be miraculous things. Sometimes people just need someone who will listen. We don't always have all the answers. It's amazing how much power a hug or a smile can have. Begin the new year with a positive attitude and you will see amazing things happen in your life.
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God bless you and yours.
Merry Christmas and Happy New Year!
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Saturday, December 26, 2009
Wednesday, December 2, 2009
New Year's Resolution Suggestion
I have a suggestion for a "New Year's Resolution" for all you moms out there. I want you to have an open mind about this and really try to do it. My suggestion is that you try to complete ONE project that you have always wanted to do. For example, I have always wanted to get my music that I have composed over the years onto paper. I sometimes worry that I will either forget it or else lose my muse as the years go on. It's sort of like a legacy of sorts that I want to leave behind. I figure it might be something that my grandkids can play and know that their grandmother enjoyed playing.
Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
************
Just do it!!
************
Everyone has dreams and goals that they want to accomplish. I urge you to figure out what YOUR dream is and go for it in 2010! Sometimes we spend so much time worrying and caring for our children that we forget about our OWN dreams. I think it's the best gift you could give yourself and your kids.
************
Just do it!!
************
Monday, November 23, 2009
Holiday Survival Tips
With the holidays coming up I thought it would be beneficial to discuss how to survive the holidays. We're not just talking about the gifts either. I think the holidays are wonderful, but they also bring many factors that are often difficult to deal with. For example, diet is often changed. A lot of sugar is consumed compared to other times and sometimes the basics of nutrition are ignored.
Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.
Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.
The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.
The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
**********************************
Jesus is the reason for the Season.
**********************************
Let's begin with dealing with off-days. Try to maintain some kind of routine, whatever that may be. It's also important that you don't forget to feed your children. Remember that they often have a snack before lunch at school and we might not even think about that. My daughter actually has snack AFTER lunch. She is accustomed to eating when she gets home from school. If you notice your children acting a little "hyper" or irritable then it might mean that they are hungry.
Next, I want to talk about gifts. Maybe it's because I have four children, but I think that it's important that children understand the reason for the season. They don't need a hundred presents to feel loved. As a matter of fact, I know some families that tell their children that Santa only has room for one present for each child and then the rest are from the parents. That makes it a lot easier to explain when they don't have the funds to get them what they want. In MY family, we don't do "wish lists". I just talk to my children and I KNOW what they want. As a matter of fact, there are things out there that they don't even KNOW about.
The last thing is spending time with your family. Sometimes spending time with extended family can be overwhelming for everyone.... but especially the children. Try to be mindful of things that may not seem such a big deal to you, but that could make things stressful. For example, talk to your children about rules at other people's homes. Explain the importance of using their manners and remembering their please and thank you's. You may want your children to bring a special toy or something to do in case there is not much to do where they are going. That usually works for us. If you have to travel a long distance, try bringing blankets and pillows. Those things seem to help relax the kids and comes in handy when they fall asleep in the car on the way home.
The holidays don't have to be stressful. Just remember the reason for the season and try not to get caught up the marketing of the holidays. There is no reason to max out credit cards and over-extend yourself in time as well. The most valuable gift you can give yourself and others is the gift of peace and joy. That is something that money can't buy.
**********************************
Jesus is the reason for the Season.
**********************************
Wednesday, November 11, 2009
It's So Much Work to be Your Friend
"It's So Much Work to be Your Friend" is the latest video I have watched by Rick Lavoie. I had the opportunity to watch it at the last PA meeting at our children's school. It was enlightening and informative and everything in between. I wanted to share some of the things that I learned and hopefully can help many of you with your own children.
Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.
He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.
Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.
Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.
Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.
Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.
The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.
If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!
**************************
This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
**************************
Communication is basically the key to social interaction. There are numerous things that we take for granted such as body language, cultural differences, personal space, among other things. Rick explained how deficits in any or all of these areas can have a huge impact on the type of adult your child will grow up to be. Friends are not a luxury... they are a necessity. That is why it is crucial to make sure that our children learn how to make friends, and more importantly how to keep them.
He talked about so many things that my head is about to explode right now. However, I will try and discuss a few of the things that might be pertinent to many of you reading this... since, I feel it's pertinent to me. One of the things he talked about was the fact that children don't have the same opportunities to make friends like we did. They don't have as much "free time" at school and then they get home and have homework. By the time they can play they end up on the computer or watching t.v. He pointed out how "play dates" are the thing now and that the majority of the time the kids will end up playing video games and not say a single word to one another. He suggested making the first play date in a neutral territory such as a playground. He also suggested that it never be three kids since ultimately YOUR child will be the one left out.
Lavoie gave a rather interesting statistic. He said that communication is 93% NONVERBAL! I was surprised to hear this, but it makes sense once you think about it. Facial expressions, hand gestures, body language, just to name a few are some of the things that say more than words. Some kids have a difficult time understanding the nonverbal cues that people make. This is critical in understanding why sometimes kids with learning disabilities have social problems and difficulty making friends. For example, Lavoie told a story about a time when he had some REALLY good news to tell his wife and he looked all over the school for her (she worked with him). When he finally found her, she was in the dining hall talking to another teacher. He said that the first thing he noticed was the somber look on their faces and right away he knew something was wrong. Instead of telling his wife the good news, he decided to approach them cautiously and ask what was wrong. He found out that the other teacher had just gotten the news that someone close to her had passed away. He told us this story and then asked, "how many of YOUR kids would have just gone up to us and told us the good news without even realizing that it was inappropriate?" I looked at my husband and nodded because that described our #2 very well.
Personal space is another issue. He demonstrated how we Americans have a need for our space. Some of the examples he gave were rather humorous, but true. For example, he mentioned how in a restaurant our table is OUR table. If anyone else tried to sit there or put something on our table then we would definitely not like it. Another example is sitting on a plane. The tray is ours and if someone was to put their drink on it then that would be invading our space. The last example is the most common thing that people mention.... the elevator. We avoid eye contact and NEVER touch another person if we can help it. It all depends on the situation, but there is a social understanding that we will behave in certain ways under certain conditions. What is appropriate in one situation would be totally inappropriate in another. How do you teach this to a child? He said to take every opportunity to talk to your children and to teach them. We take it for granted that we have decades of experience. We can pass that on to our children.
Social contracts are also very complex. For example, if a man is walking down a street and a lady is approaching him then he might nod or say hello but he will keep his distance. If he were to approach her and touch her that would be totally inappropriate. I see children with autism or other learning disabilities who will hug strangers out of the blue. They might stare without realizing it. These things could be misinterpreted. Lavoie also gave an example of a child who went to a vending machine and couldn't make up his mind. He stood there for several minutes when all of a sudden a lady came up behind him and waited. She waited for almost five minutes and then left in a huff. The "social contract" in this situation would have been to let the lady go ahead while he made up his mind, but he totally did not get it. Parents can teach their kids by example, but more importantly, we should verbally discuss these things as well. We need to take advantage of every opportunity and not take it for granted that our children will "just get it" because they might not.
Voice dynamics is yet one of the more complex things for some children to grasp. Lavoie gave examples of how just a simple increase in volume of a word in a sentence can change the meaning. I see this with my OWN child who sometimes will sound rather disrespectful without even realizing it. I have to remind him all the time. He doesn't understand that his tone and volume affect the meaning of his words. At times I feel like he's a parrot and will mimic what he hears. He will sometimes repeat what I say. I have to remind myself that I can take these situations and transform them into a learning experience. He's still so young and I have so much I need to teach him.
The last thing I wanted to share was story he closed with. He said that in all his years teaching at his school for children with special needs, the number one issue that was top priority for parents and students alike was not academics and getting into a prestigious college. It was the basic need of friendship. He asked a group of teenagers if they had the choice between doing excellent in academics or not ever having any problems socially for the rest of their school years, what would they choose? Inevitably they all chose the latter. We cannot underestimate the power of friendship for a child. It will mold, shape, and guide them to be the adults they will become.
If you have the opportunity to see ANY of Lavoie's videos I encourage you to do so. He always puts everything in perspective and gives parents simple tools that can accomplish so much!
**************************
This is the link if you'd like to purchase the video. I feel blessed to have a school that will offer these videos to the parents so that we don't have to purchase them.
http://www.shoppbs.org/product/index.jsp?productId=2082686
**************************
Monday, November 2, 2009
Reality Check Time
**The following information may not be appropriate for young readers. I apologize if some of the content seems offensive, but this is information that might save your child's life.**
I just wanted to share with those of you who can relate how important it is to remember that there is always light at the end of the tunnel. No matter how dark things may get or how hectic your life may seem to be it is always a matter of time before things eventually get better. However, it is so important to never let your guard down. That is the main reason for this post.
No matter how safe you think your neighborhood is or how wonderful your neighbors might seem, it is a fact that the majority of crimes against children are done by someone they KNOW! Does this mean you have to be paranoid? Absolutely not. Does this mean you need to be vigilant? You BETTER be!!! Unfortunately, we live in a time when you can't just assume that other families or friends have the same standards you do. I lived in a cul de sac in my previous home and thought I knew all my neighbors very well. It was a shock to me when one morning we saw the police at our neighbor's house and the parents were yelling and screaming at one another. I found out later that they did drugs. I actually let me children participate in an Easter Egg hunt at their house just a few months prior to that incident! My point is that you just never know.
There are numerous things you can do to help your children. First, you need to teach them about personal space and what is appropriate touch.... and more importantly, what is inappropriate touch. If there is a "Stranger Danger" or other similar course then I would encourage you to enroll your child at least for a short period of time. It is never too early to learn those vital skills. I know what you are probably thinking right now, "I won't let my child out of my sight before they are school aged." I hate to even say this, but your child can be "groomed" before your eyes and you wouldn't even know it. "Grooming" refers to the process by which a sex predator will touch a child and basically get them used to his touch. This process also includes testing the child to see how he might react. I know this is difficult to hear, but I feel it's critical for all of you to understand.
The second way you can help your child is by keeping open lines of communication. This will become even MORE critical as they get older. My parents taught me this concept very well. I felt like I could talk to them about ANYTHING! I have tried to continue that with my own children. An important point I want to make right now is that it is important for you to initiate conversation with your child. You might need to ask point blank if something inappropriate has happened... especially if those "mommy" instincts kick in and you know something is not quite right. It might not be a bad idea to periodically have family night lessons about this concept. You can have scenarios and act them out to show what to do in certain situations. The important thing is to not make it scary. You definitely don't want your child to be afraid. You DO want them to be cautious and to be mindful of things that they need to tell you. ALWAYS... and I mean ALWAYS stress the fact that they will NEVER EVER get in trouble for telling you. Many times the adult predator might say that they will get in trouble if they tell.
The last thing I want to talk about is what do you do when your child comes to you with something as awful as what we have talked about. Your first instinct will be to kill or strangle the offender. First, congratulate and say how proud you are that they came to you. Make sure they know that it wasn't their fault. Next, get as much information as you can. You might want to get a doll and tell your child to show you exactly what happened. It will be difficult, but you need as much specific detail about what happened since you don't want to have any question that it was an inappropriate act. Most children will not make things like that up. In special needs children the predator will often count on the fact that perhaps the parents or other adults will not take the accusations seriously. That makes those children more vulnerable.
All you have to do is turn on the nightly news and it won't be long before you hear about a child being abducted or about a pervert who has done horrible things. The reality is that the parents of these kids never thought it could happen to them. I have personal experience about how you can never be too careful. A young military man with children of his own may seem like the last person you would suspect of being a pedophile, but I knew such a person. He went to church every Sunday and had children at his house every day. Don't be fooled by appearances. Trust your instincts. A little prayer doesn't hurt either.
**************
http://www.missingkids.com/missingkids/servlet/PublicHomeServlet?LanguageCountry=en_US
For more information check out this website.
**************
I just wanted to share with those of you who can relate how important it is to remember that there is always light at the end of the tunnel. No matter how dark things may get or how hectic your life may seem to be it is always a matter of time before things eventually get better. However, it is so important to never let your guard down. That is the main reason for this post.
No matter how safe you think your neighborhood is or how wonderful your neighbors might seem, it is a fact that the majority of crimes against children are done by someone they KNOW! Does this mean you have to be paranoid? Absolutely not. Does this mean you need to be vigilant? You BETTER be!!! Unfortunately, we live in a time when you can't just assume that other families or friends have the same standards you do. I lived in a cul de sac in my previous home and thought I knew all my neighbors very well. It was a shock to me when one morning we saw the police at our neighbor's house and the parents were yelling and screaming at one another. I found out later that they did drugs. I actually let me children participate in an Easter Egg hunt at their house just a few months prior to that incident! My point is that you just never know.
There are numerous things you can do to help your children. First, you need to teach them about personal space and what is appropriate touch.... and more importantly, what is inappropriate touch. If there is a "Stranger Danger" or other similar course then I would encourage you to enroll your child at least for a short period of time. It is never too early to learn those vital skills. I know what you are probably thinking right now, "I won't let my child out of my sight before they are school aged." I hate to even say this, but your child can be "groomed" before your eyes and you wouldn't even know it. "Grooming" refers to the process by which a sex predator will touch a child and basically get them used to his touch. This process also includes testing the child to see how he might react. I know this is difficult to hear, but I feel it's critical for all of you to understand.
The second way you can help your child is by keeping open lines of communication. This will become even MORE critical as they get older. My parents taught me this concept very well. I felt like I could talk to them about ANYTHING! I have tried to continue that with my own children. An important point I want to make right now is that it is important for you to initiate conversation with your child. You might need to ask point blank if something inappropriate has happened... especially if those "mommy" instincts kick in and you know something is not quite right. It might not be a bad idea to periodically have family night lessons about this concept. You can have scenarios and act them out to show what to do in certain situations. The important thing is to not make it scary. You definitely don't want your child to be afraid. You DO want them to be cautious and to be mindful of things that they need to tell you. ALWAYS... and I mean ALWAYS stress the fact that they will NEVER EVER get in trouble for telling you. Many times the adult predator might say that they will get in trouble if they tell.
The last thing I want to talk about is what do you do when your child comes to you with something as awful as what we have talked about. Your first instinct will be to kill or strangle the offender. First, congratulate and say how proud you are that they came to you. Make sure they know that it wasn't their fault. Next, get as much information as you can. You might want to get a doll and tell your child to show you exactly what happened. It will be difficult, but you need as much specific detail about what happened since you don't want to have any question that it was an inappropriate act. Most children will not make things like that up. In special needs children the predator will often count on the fact that perhaps the parents or other adults will not take the accusations seriously. That makes those children more vulnerable.
All you have to do is turn on the nightly news and it won't be long before you hear about a child being abducted or about a pervert who has done horrible things. The reality is that the parents of these kids never thought it could happen to them. I have personal experience about how you can never be too careful. A young military man with children of his own may seem like the last person you would suspect of being a pedophile, but I knew such a person. He went to church every Sunday and had children at his house every day. Don't be fooled by appearances. Trust your instincts. A little prayer doesn't hurt either.
**************
http://www.missingkids.com/missingkids/servlet/PublicHomeServlet?LanguageCountry=en_US
For more information check out this website.
**************
Monday, October 26, 2009
Medical Insurance Nightmare Update
I have some exciting news for all of you who have been following my medical insurance dilemma. For those of you who are not familiar with it... this is a short synopsis:
In April 2008 my entire family got tested for the ATP7B gene since my daughter had been recently diagnosed with Wilson's Disease in February 2008. This is a very rare genetic test and so I had no idea what to expect. The results were good...we were all carriers and did not have the defect. However, my nightmare began when I received the bill for each of the six members of my family. The bills were in the thousands for each test. I just knew that there was a billing error. Since we couldn't afford to pay the bills and then have reimbursement our bills went to collections. The lab blamed the insurance company and the insurance company kept blaming the lab. I spent countless hours on the phone with each trying to solve the mix-up. However, it seemed to get worse with time. I was just about to give up when one day I was taking a shower and thought to myself, "why don't I just call the lab and find out how much the test is supposed to cost?" I did just that! To make a looooong story short, I was able to find out that indeed the testing was not supposed to be as much as they billed me and the lady was able to take our bills out of collections. I spent another three months calling up the insurance company and the billing office at the lab to make sure that our bills were not placed in collections once again.
The update is as follows: our bills came in today and our balance is (drum roll please......) ZERO!!!! I am so glad that I never gave up. I knew that the time I spent on the phone with the representatives would pay off. In the meantime, I got a Case Manager for my daughter and I will write more about that later. This person will basically be my advocate if anything like this happens in the future. The way things are looking right now with the health care mess.... I will definitely need an advocate.
***************************************
Let us pray that the government does
not make things worse than they already
are.
***************************************
In April 2008 my entire family got tested for the ATP7B gene since my daughter had been recently diagnosed with Wilson's Disease in February 2008. This is a very rare genetic test and so I had no idea what to expect. The results were good...we were all carriers and did not have the defect. However, my nightmare began when I received the bill for each of the six members of my family. The bills were in the thousands for each test. I just knew that there was a billing error. Since we couldn't afford to pay the bills and then have reimbursement our bills went to collections. The lab blamed the insurance company and the insurance company kept blaming the lab. I spent countless hours on the phone with each trying to solve the mix-up. However, it seemed to get worse with time. I was just about to give up when one day I was taking a shower and thought to myself, "why don't I just call the lab and find out how much the test is supposed to cost?" I did just that! To make a looooong story short, I was able to find out that indeed the testing was not supposed to be as much as they billed me and the lady was able to take our bills out of collections. I spent another three months calling up the insurance company and the billing office at the lab to make sure that our bills were not placed in collections once again.
The update is as follows: our bills came in today and our balance is (drum roll please......) ZERO!!!! I am so glad that I never gave up. I knew that the time I spent on the phone with the representatives would pay off. In the meantime, I got a Case Manager for my daughter and I will write more about that later. This person will basically be my advocate if anything like this happens in the future. The way things are looking right now with the health care mess.... I will definitely need an advocate.
***************************************
Let us pray that the government does
not make things worse than they already
are.
***************************************
Sunday, October 25, 2009
Autism Checklist and Warning Signs
There isn't a formal checklist for autism. In fact, there are many things that physicians will actually disagree about. For example, many parents will say that their children have digestive issues or issues with food and doctors will often dismiss those symptoms.
I would like to refer you all to my 8/10/09 post: "When Should I Worry?" In that post I talk about the warning signs and go into detail about them. I think it's important to have a good screening tool. Hopefully that will help a lot of you. Of course, this is not a exact science. I always tell mothers to go with their gut... that is usually the best screening tool we have.
I have compiled a checklist using information I have learned from experience as well as professionals I have dealt with in the past thirteen years. The main thing to remember is that this is mainly a screening tool and should not be confused with a diagnostic tool. The only person who can definitively tell you if your child has autism or is in the spectrum is a clinical psychologist or psychiatrist combined with neurological evaluation and behavioral specialist. We are basically talking about a team of doctors.
First Signs of Trouble:
1) The child is not progressing at the same rate as other children in any of the following areas: speech, motor skills, socially, or emotionally.
2) You notice odd behavior such as repetitive motions or sounds.
3) There is no or little eye contact.
4) Walking is unusual. For example, he might walk on tiptoes or have an unusual gait.
5) The child has an unusual sleep pattern.
6) The child is sensitive to sounds, textures, and is easily overstimulated.
Those are all things that are early warning signs. If your child also has ADD or ADHD then there are other things I could add to the list. For the sake of not being confusing, I thought it would be easier to focus on autism. Unfortunately, many children with autism or in the spectrum will also have ADD or ADHD.
Progressive Warning Signs:
1)There is a regression in speech, social skills, or emotional health. A regression might also mean that they do not progress beyond a certain level but still retain what they have learned. That is still considered "regression."
2)At this point the child has had to learn how to cope so they might cover their ears to shield themselves against auditory stimulation. This is textbook for many kids with autism.
3)Stimming is more apparent. This means you might see a child humming or making other sounds. I found this list in a very informative website: http://www.autism-in-the-christian-home.com/stimming.html
"This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping"
This is the most misunderstood of all the symptoms and is the most difficult to control. Stimming is the child's way of dealing with certain situations. It might mean the child is happy or it might mean that the child is frustrated or sad.
4)Language patterns are irregular. The child might sound like a "little professor" and/or sort of robotic in language without the usual inflection that most kids have. This is one of the most interesting of all the signs. It's not necessarily the content of what they say, but the way they say it.
5)You will notice that they don't make friends easily or else they consider everyone their friend. They don't understand social cues and therefore it's difficult for them to engage in a typical activity or conversation and make those bonds that kids usually make. A parent will try their hardest to put the child in situations where there are kids, but the child will remain by himself or else avoid being around the group as a whole. This is often difficult for the parent since they don't want their child to be alone, but it's often what the child wants and sometimes needs.
I want to stress that there is a BROAD spectrum for autism. There are some kids that will appear to get better with age.... while others will get progressively worse. The spectrum includes Asperger's, PDD(Pervasive Developmental Disorder), and some are looking at the ADD/ADHD link as well. However, just because your child is diagnosed with autism doesn't mean that's the end. Early intervention is the key. The future is not written in stone. The diagnosis will help to understand the child and help with the symptoms.
********************************************
I would encourage everyone to visit:
www.autismspeaks.org
It is full of valuable information and
lots of checklists and warning signs to look
for in all ages of children.
********************************************
I would like to refer you all to my 8/10/09 post: "When Should I Worry?" In that post I talk about the warning signs and go into detail about them. I think it's important to have a good screening tool. Hopefully that will help a lot of you. Of course, this is not a exact science. I always tell mothers to go with their gut... that is usually the best screening tool we have.
I have compiled a checklist using information I have learned from experience as well as professionals I have dealt with in the past thirteen years. The main thing to remember is that this is mainly a screening tool and should not be confused with a diagnostic tool. The only person who can definitively tell you if your child has autism or is in the spectrum is a clinical psychologist or psychiatrist combined with neurological evaluation and behavioral specialist. We are basically talking about a team of doctors.
First Signs of Trouble:
1) The child is not progressing at the same rate as other children in any of the following areas: speech, motor skills, socially, or emotionally.
2) You notice odd behavior such as repetitive motions or sounds.
3) There is no or little eye contact.
4) Walking is unusual. For example, he might walk on tiptoes or have an unusual gait.
5) The child has an unusual sleep pattern.
6) The child is sensitive to sounds, textures, and is easily overstimulated.
Those are all things that are early warning signs. If your child also has ADD or ADHD then there are other things I could add to the list. For the sake of not being confusing, I thought it would be easier to focus on autism. Unfortunately, many children with autism or in the spectrum will also have ADD or ADHD.
Progressive Warning Signs:
1)There is a regression in speech, social skills, or emotional health. A regression might also mean that they do not progress beyond a certain level but still retain what they have learned. That is still considered "regression."
2)At this point the child has had to learn how to cope so they might cover their ears to shield themselves against auditory stimulation. This is textbook for many kids with autism.
3)Stimming is more apparent. This means you might see a child humming or making other sounds. I found this list in a very informative website: http://www.autism-in-the-christian-home.com/stimming.html
"This behavior may involve any or all of the senses in various degrees in different individuals. Several examples are listed below.
Visual – staring at lights, blinking, gazing at fingers, lining up objects
Auditory – tapping fingers, snapping fingers, grunting, humming
Smell – smelling objects, sniffing people
Taste – licking objects, placing objects in mouth
Tactile – scratching, clapping, feeling objects nail biting, hair twisting, toe-walking
Vestibular – rocking, spinning, jumping, pacing
Proprioception – teeth grinding, pacing, jumping"
This is the most misunderstood of all the symptoms and is the most difficult to control. Stimming is the child's way of dealing with certain situations. It might mean the child is happy or it might mean that the child is frustrated or sad.
4)Language patterns are irregular. The child might sound like a "little professor" and/or sort of robotic in language without the usual inflection that most kids have. This is one of the most interesting of all the signs. It's not necessarily the content of what they say, but the way they say it.
5)You will notice that they don't make friends easily or else they consider everyone their friend. They don't understand social cues and therefore it's difficult for them to engage in a typical activity or conversation and make those bonds that kids usually make. A parent will try their hardest to put the child in situations where there are kids, but the child will remain by himself or else avoid being around the group as a whole. This is often difficult for the parent since they don't want their child to be alone, but it's often what the child wants and sometimes needs.
I want to stress that there is a BROAD spectrum for autism. There are some kids that will appear to get better with age.... while others will get progressively worse. The spectrum includes Asperger's, PDD(Pervasive Developmental Disorder), and some are looking at the ADD/ADHD link as well. However, just because your child is diagnosed with autism doesn't mean that's the end. Early intervention is the key. The future is not written in stone. The diagnosis will help to understand the child and help with the symptoms.
********************************************
I would encourage everyone to visit:
www.autismspeaks.org
It is full of valuable information and
lots of checklists and warning signs to look
for in all ages of children.
********************************************
Tuesday, October 20, 2009
The Stigma of Special Education
I thought I would once again talk about this VERY important topic. It has come up a few times with other mothers I have spoken with, and it's time to educate everyone about it!
In the "old days" when a child was considered "mentally retarded" they were either placed in an asylum or another special school away from the mainstream children. Parents were ashamed and often left no choice but to give up their children to the state to take care of. It's true that we have come a LONG way... but we still have a long way to go. It breaks my heart when I see a child who needs intervention and the parents choose to ignore it because of their fears of stigma attached to labels of "special education." Luckily, mentally retarded is not used very often these days. Instead they use words such as "learning disabled" or "delayed". The reason that "mentally retarded" is not used anymore is because educators know NOW that just because a child learns differently does not mean they are not intelligent or capable of learning.
I have been blessed with children who are of superior intelligence. However, I can definitely relate to the fear of stigma. I am just thankful that I got over it! I recently spoke with a mother who is of foreign descent and she had concerns over her son's speech and social skills. Her son is in my #4's preschool class. I spoke with her last year and unfortunately she did have her child evaluated. I tried to make the point that the sooner her son got help, the better the outcome. She just did not want to admit that her child needed intervention. She used the excuse that her son was bilingual and that they spoke a different language at home. She thought, at the time, that her son's delay was only temporary. NOW...it's a year later and her son's condition is not improving. She called me and asked me what she should do and I advised her of who to call and how to go about getting an evaluation. I could sense her frustration and pain. I went through the exact same thing! I tried to reassure her and told her that her son might only need speech therapy for a couple years. Perhaps he would not even qualify by the time he started school. He is currently 3 years old and has about two years before kindergarten. That gives him PLENTY of time to make some major progress.
I have spoken of warning signs for autism and things to look out for. If I had a checklist for all the things that I have spoken about I am afraid that this boy would have many checks on the list. The other day I stayed after dropping off my son and spoke to this mother. I watched her son as he proceeded to cover his ears during "circle time" and my mind started to race! I asked her about it and she said that he did that often. I don't know if she understood the significance of that or not, but then she proceeded to tell me about other behaviors he exhibits at home. She told me that he often will be fixated with inclines and play with cars or whatever toy and "go up and down....up and down" for extended periods of time. She also told me that he will often tell people to be quiet. He doesn't like noise and it seems to bother him. He has recently began to throw toys out of frustration. (That is definitely a sign he needs speech therapy for sure!) I spoke with the teacher and she told me that he has sensory integration issues (fancy wording meaning that he doesn't like certain textures, etc...). She also expressed her concerns about his social interaction with other kids. It breaks my heart to hear all these things because I KNOW for a surety that this child has some form of autism but speech won't fix it!
The fact is that the public school system is not equipped to deal with children who are like this little boy. They can offer speech therapy and occupational therapy... beyond that it is up to the parent. As far as I can tell, this boy is extremely bright! He is already reading and he's not even four! The main thing to do at this point is to offer all the services that they offer and watch him very closely. IF speech therapy doesn't "fix" his issues then this mom will need to have him evaluated by psychologists and other mental health professionals. It might not hurt to see a neurologist as well. There is a clinic at Children's Hospital that has a good reputation. As I see it... time is of the essence! I had MY #4 evaluated by a neurologist at the age of two just to make sure. Parents MUST act quickly and be proactive. They cannot rely on others for the progress of their children. I have learned that the hard way and I am determined to get the message out to everyone and anyone who will listen.
**************************
http://www.cspwal.com/forms/eireferralform.pdf
(that is the referral form for Alabama Early Intervention)
The only problem is that if the child is already 3 years old then they won't "qualify" for early intervention. They would automatically be in the public school system.
http://www.mps.k12.al.us/index.php/departments/special-education/introduction
(this is the link for the Montgomery Public School Special Education Services)
***************************
In the "old days" when a child was considered "mentally retarded" they were either placed in an asylum or another special school away from the mainstream children. Parents were ashamed and often left no choice but to give up their children to the state to take care of. It's true that we have come a LONG way... but we still have a long way to go. It breaks my heart when I see a child who needs intervention and the parents choose to ignore it because of their fears of stigma attached to labels of "special education." Luckily, mentally retarded is not used very often these days. Instead they use words such as "learning disabled" or "delayed". The reason that "mentally retarded" is not used anymore is because educators know NOW that just because a child learns differently does not mean they are not intelligent or capable of learning.
I have been blessed with children who are of superior intelligence. However, I can definitely relate to the fear of stigma. I am just thankful that I got over it! I recently spoke with a mother who is of foreign descent and she had concerns over her son's speech and social skills. Her son is in my #4's preschool class. I spoke with her last year and unfortunately she did have her child evaluated. I tried to make the point that the sooner her son got help, the better the outcome. She just did not want to admit that her child needed intervention. She used the excuse that her son was bilingual and that they spoke a different language at home. She thought, at the time, that her son's delay was only temporary. NOW...it's a year later and her son's condition is not improving. She called me and asked me what she should do and I advised her of who to call and how to go about getting an evaluation. I could sense her frustration and pain. I went through the exact same thing! I tried to reassure her and told her that her son might only need speech therapy for a couple years. Perhaps he would not even qualify by the time he started school. He is currently 3 years old and has about two years before kindergarten. That gives him PLENTY of time to make some major progress.
I have spoken of warning signs for autism and things to look out for. If I had a checklist for all the things that I have spoken about I am afraid that this boy would have many checks on the list. The other day I stayed after dropping off my son and spoke to this mother. I watched her son as he proceeded to cover his ears during "circle time" and my mind started to race! I asked her about it and she said that he did that often. I don't know if she understood the significance of that or not, but then she proceeded to tell me about other behaviors he exhibits at home. She told me that he often will be fixated with inclines and play with cars or whatever toy and "go up and down....up and down" for extended periods of time. She also told me that he will often tell people to be quiet. He doesn't like noise and it seems to bother him. He has recently began to throw toys out of frustration. (That is definitely a sign he needs speech therapy for sure!) I spoke with the teacher and she told me that he has sensory integration issues (fancy wording meaning that he doesn't like certain textures, etc...). She also expressed her concerns about his social interaction with other kids. It breaks my heart to hear all these things because I KNOW for a surety that this child has some form of autism but speech won't fix it!
The fact is that the public school system is not equipped to deal with children who are like this little boy. They can offer speech therapy and occupational therapy... beyond that it is up to the parent. As far as I can tell, this boy is extremely bright! He is already reading and he's not even four! The main thing to do at this point is to offer all the services that they offer and watch him very closely. IF speech therapy doesn't "fix" his issues then this mom will need to have him evaluated by psychologists and other mental health professionals. It might not hurt to see a neurologist as well. There is a clinic at Children's Hospital that has a good reputation. As I see it... time is of the essence! I had MY #4 evaluated by a neurologist at the age of two just to make sure. Parents MUST act quickly and be proactive. They cannot rely on others for the progress of their children. I have learned that the hard way and I am determined to get the message out to everyone and anyone who will listen.
**************************
http://www.cspwal.com/forms/eireferralform.pdf
(that is the referral form for Alabama Early Intervention)
The only problem is that if the child is already 3 years old then they won't "qualify" for early intervention. They would automatically be in the public school system.
http://www.mps.k12.al.us/index.php/departments/special-education/introduction
(this is the link for the Montgomery Public School Special Education Services)
***************************
Monday, October 19, 2009
My Dog Doesn't Bite... But My Child Sure Does!
My #2 is nine years old now. He has ADHD, PDD, and Tourette's. At first glance you really can't tell there is anything wrong with him. However, after just a few minutes you will be able to spot a lot of energy and then odd behavior and sounds. He doesn't always "misbehave" and I am so thankful for that. He is a very sweet and smart child. I truly enjoy spending time with him.
The reason I decided to post this was that I feel like sometimes we make some progress only to find out that there are other issues that we did not know about. It's almost like we take one step forward and two steps back. It's so hard to explain. Those of you who have been in my shoes understand exactly what I mean... it's the unpredictable and irrational behaviors that sometimes pop out of nowhere.
First things first.... we decided to finally get a diagnosis for our #2. He has always been labeled as "PDD-NOS" and I thought that was such a generic label. I decided to take him to a psychologist a few months back before school started and they FINALLY diagnosed him with the three aforementioned labels. I have to admit that I am not big on labels. However, as I have mentioned in the past it is important to do that in order to establish an ILP (Individualized Learning Program). If we don't know what his weaknesses are then there is no way we can help him with his strengths. For example, if we would have known about his Tourette's then perhaps his Kindergarten teacher might have been able to better understand his sounds during naptime and grunting and coughing sounds he made during instructional time. She MIGHT have been a little more understanding.
We started medication before school started. Right now he is taking 18 mg of Concerta and it works great for him. I can tell when it is working and when it has worn off or we forget to give it to him. The difference is amazing! I have been hesitant to start him on any drugs because of what we went through with my oldest. However, my #2 has had NO side-effects or any other issues on this drug. As a matter of fact, his ticks are controlled (even though I have read numerous sources that say the drug sometimes aggravates the ticks). I am convinced that the reason the drug works for him is that it's a low dose and we waited for him to be a little older before giving it to him so he is better able to communicate with us. That is so critical!
We recently adopted a nine month-old puppy and it has been a wonderful thing for our family. I am excited about the opportunity to teach all my children responsibility and how to treat an animal. So far it has been a positive experience. However, I am beginning to wonder if some of the animal's behavior is not rubbing off on my kids. For example, my youngest has decided to go outside to go potty! This includes going #2....which adds another disgusting element to the equation since the dog will find it and eat it!! Also, my #2 began biting other children a few weeks ago. That is a new behavior that we had not had to deal with since he was a toddler. What posseses a nine year-old to bite? The circumstances have led me to believe that perhaps he was overstimulated and very frustrated at that moment. However that is no consolation to the parents of the victims. Also, it's definitely very embarrassing to me as a mother.... especially when I get the dreaded phone call. How in the world do you explain that one?
I have definitely grown thicker skin over the years. However, the fact is that it's never easy when your child inflicts pain on others. I remember when my oldest came home with bite marks on his shoulder from daycare. I was so upset!! NOW... here I am on the other end. It definitely puts things into perspective. You just never know what your child is capable of. That is why it's so important to keep an open mind when it comes to a child's behavior. It's so easy to jump to conclusions. I am sure that the parents thought my child was either being a bully or wanting to hurt their child on purpose. They didn't realize that my child was not thinking before he acted. He was being impulsive and I tried to explain my child's challenges and that we were trying to stay on top of things. I reassured them that he was reprimanded and to NEVER hesitate to let me know if it happened again. I think it's so important for parents to know that I am not one of those parents who makes excuses for my child. However, I also feel it's more important for them to know that my child is not typical and that the circumstances are a little different. I try to educate people every opportunity that I can. They don't really know me and they don't know my child. That is definitely a big obstacle. I just see it as a challenge. I am just thankful for the spirit of kindness that these parents showed me. I didn't feel like they were putting blame on me as a parent. They accepted my apology and reassured me that their children were okay.
I will continue to advocate for my children and their challenges. I know that these trials I have now will become blessings for others in the future. I have already had opportunities to help others who are going through similar things. In a future post I will share some of those stories with you. I think they are important to share so that we ALL can learn from them.
*******************
God bless you all!!
*******************
The reason I decided to post this was that I feel like sometimes we make some progress only to find out that there are other issues that we did not know about. It's almost like we take one step forward and two steps back. It's so hard to explain. Those of you who have been in my shoes understand exactly what I mean... it's the unpredictable and irrational behaviors that sometimes pop out of nowhere.
First things first.... we decided to finally get a diagnosis for our #2. He has always been labeled as "PDD-NOS" and I thought that was such a generic label. I decided to take him to a psychologist a few months back before school started and they FINALLY diagnosed him with the three aforementioned labels. I have to admit that I am not big on labels. However, as I have mentioned in the past it is important to do that in order to establish an ILP (Individualized Learning Program). If we don't know what his weaknesses are then there is no way we can help him with his strengths. For example, if we would have known about his Tourette's then perhaps his Kindergarten teacher might have been able to better understand his sounds during naptime and grunting and coughing sounds he made during instructional time. She MIGHT have been a little more understanding.
We started medication before school started. Right now he is taking 18 mg of Concerta and it works great for him. I can tell when it is working and when it has worn off or we forget to give it to him. The difference is amazing! I have been hesitant to start him on any drugs because of what we went through with my oldest. However, my #2 has had NO side-effects or any other issues on this drug. As a matter of fact, his ticks are controlled (even though I have read numerous sources that say the drug sometimes aggravates the ticks). I am convinced that the reason the drug works for him is that it's a low dose and we waited for him to be a little older before giving it to him so he is better able to communicate with us. That is so critical!
We recently adopted a nine month-old puppy and it has been a wonderful thing for our family. I am excited about the opportunity to teach all my children responsibility and how to treat an animal. So far it has been a positive experience. However, I am beginning to wonder if some of the animal's behavior is not rubbing off on my kids. For example, my youngest has decided to go outside to go potty! This includes going #2....which adds another disgusting element to the equation since the dog will find it and eat it!! Also, my #2 began biting other children a few weeks ago. That is a new behavior that we had not had to deal with since he was a toddler. What posseses a nine year-old to bite? The circumstances have led me to believe that perhaps he was overstimulated and very frustrated at that moment. However that is no consolation to the parents of the victims. Also, it's definitely very embarrassing to me as a mother.... especially when I get the dreaded phone call. How in the world do you explain that one?
I have definitely grown thicker skin over the years. However, the fact is that it's never easy when your child inflicts pain on others. I remember when my oldest came home with bite marks on his shoulder from daycare. I was so upset!! NOW... here I am on the other end. It definitely puts things into perspective. You just never know what your child is capable of. That is why it's so important to keep an open mind when it comes to a child's behavior. It's so easy to jump to conclusions. I am sure that the parents thought my child was either being a bully or wanting to hurt their child on purpose. They didn't realize that my child was not thinking before he acted. He was being impulsive and I tried to explain my child's challenges and that we were trying to stay on top of things. I reassured them that he was reprimanded and to NEVER hesitate to let me know if it happened again. I think it's so important for parents to know that I am not one of those parents who makes excuses for my child. However, I also feel it's more important for them to know that my child is not typical and that the circumstances are a little different. I try to educate people every opportunity that I can. They don't really know me and they don't know my child. That is definitely a big obstacle. I just see it as a challenge. I am just thankful for the spirit of kindness that these parents showed me. I didn't feel like they were putting blame on me as a parent. They accepted my apology and reassured me that their children were okay.
I will continue to advocate for my children and their challenges. I know that these trials I have now will become blessings for others in the future. I have already had opportunities to help others who are going through similar things. In a future post I will share some of those stories with you. I think they are important to share so that we ALL can learn from them.
*******************
God bless you all!!
*******************
Friday, October 9, 2009
Confessions of a Stressed Out Mom
1)I found another use for the stress ball.... try throwing it at your child. It's far more effective and it won't leave any marks.
2)If your children refuse to take a bath or shower then just spray them with Febreeze... They will smell SOOOOO refreshing!
3)It's harder for a teacher to be mad at your child after receiving a present. We do it frequently!
4)We often eat our dinners in reverse and skip our "dessert".
5)Try using your expired coupons at Chick Fil-A. They actually accept them!
6)I don't stress out about my youngest losing his shoes at church anymore.... We just conveniently forget to put them on every Sunday.
7)I love uniforms. My children can wear them overnight and the following day and no one will ever know....definitely saves time in the mornings! (Don't forget the Febreeze.)
8)I definitely believe in "group baths" and "group showers" for that matter.
9)I love onions and my kids do not... so I lie all the time about the ingredients in my dishes. They usually believe me.
10)Last but not least, even though motherhood is stressful I have to admit that I would not have it any other way.
2)If your children refuse to take a bath or shower then just spray them with Febreeze... They will smell SOOOOO refreshing!
3)It's harder for a teacher to be mad at your child after receiving a present. We do it frequently!
4)We often eat our dinners in reverse and skip our "dessert".
5)Try using your expired coupons at Chick Fil-A. They actually accept them!
6)I don't stress out about my youngest losing his shoes at church anymore.... We just conveniently forget to put them on every Sunday.
7)I love uniforms. My children can wear them overnight and the following day and no one will ever know....definitely saves time in the mornings! (Don't forget the Febreeze.)
8)I definitely believe in "group baths" and "group showers" for that matter.
9)I love onions and my kids do not... so I lie all the time about the ingredients in my dishes. They usually believe me.
10)Last but not least, even though motherhood is stressful I have to admit that I would not have it any other way.
Monday, October 5, 2009
Autism Rate Has Increased to 1:100
http://www.usatoday.com/news/health/2009-10-05-autism-increase_N.htm
The statistics don't lie. The rate of autism is on the rise. How many will it take before the government takes action? Do they not realize that these "children" with autism will become adults with autism? Do they not realize how much money this epidemic will cost ALL of us?
Although there seems to be a disagreement as to the CAUSE of autism, the fact is that the rate of autism in the United States is steadily increasing. The article states that the rate of autism has increased to 1:100.... however, it is actually more like 1:95. I have a very important question for you all to think about. What IS autism? I believe there is a disagreement among the medical community AND parents as to what autism truly is. Some parents believe that autism is vaccine injury. There are others who believe that children are born with the gene for autism but there are environmental triggers. There are yet others who believe that if a child is exposed to enough toxins then their bodies cannot get rid of them and they end up with autism or other disorders in the spectrum. MY thought is the following: they are ALL right!!
I have written enough about my thoughts on the matter. However, I wanted to make something clear. I don't quit reading books or looking up information. Therefore, my knowledge is constantly building and expanding. Right now I am reading a book entitled: Healing and Preventing Autism written by Jenny McCarthy and Dr. Jerry Kartzinel. I have to admit that honestly I am not a fan of Jenny McCarthy, but I am SO thankful for all that she has done to expose the truth about vaccine safety. I am also SO thankful for all the doctors who have come forward and admitted to the world that there are things beyond what is taught in medical school. I believe that there are numerous treatment options now available to parents with autism because of Jenny and doctors who have supported her cause. The book is FULL of information and I will definitely write about it in a future post.
**************************************
The statistics are alarming. However,
what concerns me most is the way it is
being ignored.
**************************************
The statistics don't lie. The rate of autism is on the rise. How many will it take before the government takes action? Do they not realize that these "children" with autism will become adults with autism? Do they not realize how much money this epidemic will cost ALL of us?
Although there seems to be a disagreement as to the CAUSE of autism, the fact is that the rate of autism in the United States is steadily increasing. The article states that the rate of autism has increased to 1:100.... however, it is actually more like 1:95. I have a very important question for you all to think about. What IS autism? I believe there is a disagreement among the medical community AND parents as to what autism truly is. Some parents believe that autism is vaccine injury. There are others who believe that children are born with the gene for autism but there are environmental triggers. There are yet others who believe that if a child is exposed to enough toxins then their bodies cannot get rid of them and they end up with autism or other disorders in the spectrum. MY thought is the following: they are ALL right!!
I have written enough about my thoughts on the matter. However, I wanted to make something clear. I don't quit reading books or looking up information. Therefore, my knowledge is constantly building and expanding. Right now I am reading a book entitled: Healing and Preventing Autism written by Jenny McCarthy and Dr. Jerry Kartzinel. I have to admit that honestly I am not a fan of Jenny McCarthy, but I am SO thankful for all that she has done to expose the truth about vaccine safety. I am also SO thankful for all the doctors who have come forward and admitted to the world that there are things beyond what is taught in medical school. I believe that there are numerous treatment options now available to parents with autism because of Jenny and doctors who have supported her cause. The book is FULL of information and I will definitely write about it in a future post.
**************************************
The statistics are alarming. However,
what concerns me most is the way it is
being ignored.
**************************************
Saturday, September 19, 2009
Some Food for Thought
I consider myself an advocate for many causes. However, one thing that joins us all together is the fact that if we didn't live in this country and had the freedoms that we enjoy, our lives would be totally different. I NEVER take that for granted. Another thing to consider is the fact that many of you reading this have medical insurance. Although it might not be the best, at least we have it. Many in this country do not.
I have been doing some reading and research lately about the health care crisis and what is happening to our country. Although this blog focuses mainly on the health and care of children, I thought this post would be more than appropriate.
The following are some questions that we should all ask ourselves. If you haven't thought about these issues then I would encourage you to do so.
1) How do you feel about our health care in the United States?
2) Does your state representative KNOW how you feel about what is happening?
3) Do you know your rights concerning health insurance and coverage for your family?
4) Is it fair that the people who work in Congress have wonderful coverage and their choices concerning health care don't affect them?
5) Would it bother you to find out how much money is being spent on frivolous projects and research.... knowing that YOU are paying for it?
6) How much money is spent on illegal immigrants? (The answer will shock you!) Check out the answer at: http://kevincolby.com/2008/07/27/the-cost-of-illegal-immigrants-to-the-american-taxpayer/
7) What would you do if your child needed surgery and the hospital denied it due to insurance not covering it?
8) Can a medical insurance company legally drop your coverage without cause?
9) Who pays the bill for those people who don't have insurance or who don't have the money to pay their medical bills?
I could keep going, but I hope this gives you all some food for thought. I promise you that the more you find out about what is happening, the angrier you will become. There is so much corruption and lack of common sense in Washington. It's unreal how blinded we have become as a nation. We need to wake up and see what is happening. We've become a nation where the few or minority have the stronger voice. Case in point: I know for a fact that the majority of the children in my daughter's school are Christian and yet they can't have "Christmas Parties" since that would offend someone. They end up having to change the name to "Holiday Party" and they can not be centered around Christmas. What???!!
*********************************************
If we sit back and let others decide our fate
then we don't have a right to complain. Now
is the time to decide where you stand and do
something about it.
*********************************************
I have been doing some reading and research lately about the health care crisis and what is happening to our country. Although this blog focuses mainly on the health and care of children, I thought this post would be more than appropriate.
The following are some questions that we should all ask ourselves. If you haven't thought about these issues then I would encourage you to do so.
1) How do you feel about our health care in the United States?
2) Does your state representative KNOW how you feel about what is happening?
3) Do you know your rights concerning health insurance and coverage for your family?
4) Is it fair that the people who work in Congress have wonderful coverage and their choices concerning health care don't affect them?
5) Would it bother you to find out how much money is being spent on frivolous projects and research.... knowing that YOU are paying for it?
6) How much money is spent on illegal immigrants? (The answer will shock you!) Check out the answer at: http://kevincolby.com/2008/07/27/the-cost-of-illegal-immigrants-to-the-american-taxpayer/
7) What would you do if your child needed surgery and the hospital denied it due to insurance not covering it?
8) Can a medical insurance company legally drop your coverage without cause?
9) Who pays the bill for those people who don't have insurance or who don't have the money to pay their medical bills?
I could keep going, but I hope this gives you all some food for thought. I promise you that the more you find out about what is happening, the angrier you will become. There is so much corruption and lack of common sense in Washington. It's unreal how blinded we have become as a nation. We need to wake up and see what is happening. We've become a nation where the few or minority have the stronger voice. Case in point: I know for a fact that the majority of the children in my daughter's school are Christian and yet they can't have "Christmas Parties" since that would offend someone. They end up having to change the name to "Holiday Party" and they can not be centered around Christmas. What???!!
*********************************************
If we sit back and let others decide our fate
then we don't have a right to complain. Now
is the time to decide where you stand and do
something about it.
*********************************************
Friday, September 18, 2009
The H1N1 Flu Vaccine Dilemma
http://www.cbsnews.com/video/watch/?id=5237185n
This is the link to a very interesting CBS investigative report concerning the H1N1 vaccine. I love it when a doctor has the same thought process I do concerning vaccines. It's so refreshing to hear someone in the medical community admit the truth about vaccines.
Enjoy!!
This is the link to a very interesting CBS investigative report concerning the H1N1 vaccine. I love it when a doctor has the same thought process I do concerning vaccines. It's so refreshing to hear someone in the medical community admit the truth about vaccines.
Enjoy!!
Tuesday, September 15, 2009
The Truth About Friendship
This post was inspired by my Relief Society lesson we had last Sunday. It was taught by one of my friends and I learned so much from it. I wanted to share some of my thoughts on friendship and how important it is to me.
The truth about friends is that you have no control over who you "click" with and who you don't. I know we can be more outgoing and try to put ourselves in situations where we can make friends, but in the end it's something far deeper and spiritual that guides our paths and joins us with those we ultimately call our friends. There is usually common ground and common values that help us become closer. I feel that the autism community is one of those that is so much like my LDS community. Everyone I have met is a wonderful mother, friend, and is struggling to find answers and do what is right. It's amazing how much in common I have with people who have children with autism or any other special needs. It immediately links us together and we can talk for hours... and often do. It's true what they say: you don't know what it's like until you walk in someone else's shoes. I used to be very judgmental and criticized parents who had children who were unruly or disrespectful. I still don't like it, but now I have a better understanding of what is REALLY going on in the mind of the child. Most of the time it's not his/her fault.
A true friend will stick with you no matter what. I've had friends that I love dearly and felt very close to, drift away since my son's diagnosis. I know that part of it is that they just don't understand. However, I have made some awesome new friends in the past couple years and I wouldn't trade them for the world!!! We understand one another and don't feel we need to apologize all the time for our children. It's understood that our kids will behave inappropriately at times and we just deal with it in our own way. I love the fact that I can have friends who can give me counsel without being condescending or judgmental. I KNOW that they have walked where I have walked and so that means so much to me.
It's not easy being a good friend sometimes. I used to get my feelings hurt very easily, but have grown a rather thick skin in the past few years. It still hurts when I hear negative comments or when I see those looks of disapproval, but I don't let it get to me in the same way. I believe that there is good in everyone. No one wakes up each day and thinks to themselves, "who am I going to hurt today?" I know I am not perfect, and I am sure that I have hurt someone's feelings without even realizing it. I consider myself to be a considerate person, but I am only human. That is the biggest lesson I have learned about others. I am taught to love everyone at church and I honestly say that I do. However, I have learned to surround myself with uplifting and positive people. I have many friends, but only a handful of very close friends. I can only hope and pray that I am as a good a friend to them as they are to me.
********************************************
I hope you all have good friends who support
and uplift your soul. A good friend is like
a good bra: lifts you when you're down and
is always close to your heart.
********************************************
The truth about friends is that you have no control over who you "click" with and who you don't. I know we can be more outgoing and try to put ourselves in situations where we can make friends, but in the end it's something far deeper and spiritual that guides our paths and joins us with those we ultimately call our friends. There is usually common ground and common values that help us become closer. I feel that the autism community is one of those that is so much like my LDS community. Everyone I have met is a wonderful mother, friend, and is struggling to find answers and do what is right. It's amazing how much in common I have with people who have children with autism or any other special needs. It immediately links us together and we can talk for hours... and often do. It's true what they say: you don't know what it's like until you walk in someone else's shoes. I used to be very judgmental and criticized parents who had children who were unruly or disrespectful. I still don't like it, but now I have a better understanding of what is REALLY going on in the mind of the child. Most of the time it's not his/her fault.
A true friend will stick with you no matter what. I've had friends that I love dearly and felt very close to, drift away since my son's diagnosis. I know that part of it is that they just don't understand. However, I have made some awesome new friends in the past couple years and I wouldn't trade them for the world!!! We understand one another and don't feel we need to apologize all the time for our children. It's understood that our kids will behave inappropriately at times and we just deal with it in our own way. I love the fact that I can have friends who can give me counsel without being condescending or judgmental. I KNOW that they have walked where I have walked and so that means so much to me.
It's not easy being a good friend sometimes. I used to get my feelings hurt very easily, but have grown a rather thick skin in the past few years. It still hurts when I hear negative comments or when I see those looks of disapproval, but I don't let it get to me in the same way. I believe that there is good in everyone. No one wakes up each day and thinks to themselves, "who am I going to hurt today?" I know I am not perfect, and I am sure that I have hurt someone's feelings without even realizing it. I consider myself to be a considerate person, but I am only human. That is the biggest lesson I have learned about others. I am taught to love everyone at church and I honestly say that I do. However, I have learned to surround myself with uplifting and positive people. I have many friends, but only a handful of very close friends. I can only hope and pray that I am as a good a friend to them as they are to me.
********************************************
I hope you all have good friends who support
and uplift your soul. A good friend is like
a good bra: lifts you when you're down and
is always close to your heart.
********************************************
Saturday, September 5, 2009
Looking Forward with Wilson's Disease
There is no reason to dwell on what happened in the past. The only thing I can do right now is look at the future. I could feel a lot of resentment towards the doctors who dismissed my daughter's illness or my worries. I could also feel a lot of anger towards the pediatricians who tried to make me feel like I was crazy. However, I have learned so much from my experiences and I have helped so many people that I almost look at it all as a big blessing in my life.
I have to share a recent experience I had with a wonderful doctor. His office is located in Florida (another state away from us), but he was referred to me by someone I trust very much. I called the office and they told me that he was out of the country and would not be back for another month. Last week, I checked my phone messages and he actually called me HIMSELF and left a very sweet message apologizing for not being able to contact me earlier. I almost fainted! I returned his call, but he was not in his office and his nurse said she would leave him a message to call me back. Of course, in the back of my mind I thought he MIGHT call me the next day or by the end of the week at best. Well... he called me on his way home that very same day!! We talked for about fifteen minutes and he was the sweetest and warmest doctor I have ever talked to. He listened to me and told me his recommendations for Sarah. He told me that he had actually called the Mayo clinic to inquire about the genetic testing that was done just to make sure that the diagnosis was correct!! He confirmed and validated the results to me. That made me feel so much better because I have had some doubts in the back of my mind concerning that very thing.
After telling him some background information concerning what I went through with previous doctors, he told me that unfortunately my story was not unusual. He said that basically most parents have gone through the same thing. He also told me that the neurologist who tested my daughter for copper and other various tests that others don't normally test for was "one in a million" and had a "head on his shoulders". I wish ALL doctors tested for those things. Some of the tests could explain so many disorders! It's amazing what blood can tell a doctor if you just give it a chance. I worked in the laboratory and I can tell you from personal experience that laboratory tests can sometimes tell the doctor more than the symptoms and physical exams... as a matter of fact, some doctors RELY HEAVILY on the laboratory testing. In many situations it's just a matter of what insurance will cover. That is so sad.
One thing I want to make sure to clear up is that the doctor explained chelation to me. I have been very scared about that and was unwilling to even consider it with my daughter. However, chelation is evidently the only way to get rid of the copper that has accumulated in the body. The zinc acetate is just a way to keep the body from building up any more copper in the body, but it doesn't get rid of what was there before. We are going to discuss that in depth at her first appointment with this doctor. I still feel that I wouldn't want to do something like chelation with doctors who don't know much about it. In other words, I don't want my daughter to be a guinea pig. At least with this doctor, he has treated almost ten pediatric patients so far and that is more than any other in my area. I want to discuss the side-effects and possible scenarios that could occur. After reading Dr. George Brewer's book, I was under the impression that zinc therapy was the first line of therapy for "asymptomatic" patients. That is something I definitely want to discuss with him. Is my daughter technically "asymptomatic" or not? I also want to know how to find out how much copper she has accumulated.
I have a dear friend who is not of my faith, but she reminded me that this experience is definitely a faith-building experience and a testimony that God does answer prayers. It's definitely a testament of my faith. I continue to rely on spiritual guidance and pray that the doctors do the same.
*************************
Looking forward sometimes
means looking back and
realizing that you can
either agonize over
decisions made or learn
from those experiences.
**************************
I have to share a recent experience I had with a wonderful doctor. His office is located in Florida (another state away from us), but he was referred to me by someone I trust very much. I called the office and they told me that he was out of the country and would not be back for another month. Last week, I checked my phone messages and he actually called me HIMSELF and left a very sweet message apologizing for not being able to contact me earlier. I almost fainted! I returned his call, but he was not in his office and his nurse said she would leave him a message to call me back. Of course, in the back of my mind I thought he MIGHT call me the next day or by the end of the week at best. Well... he called me on his way home that very same day!! We talked for about fifteen minutes and he was the sweetest and warmest doctor I have ever talked to. He listened to me and told me his recommendations for Sarah. He told me that he had actually called the Mayo clinic to inquire about the genetic testing that was done just to make sure that the diagnosis was correct!! He confirmed and validated the results to me. That made me feel so much better because I have had some doubts in the back of my mind concerning that very thing.
After telling him some background information concerning what I went through with previous doctors, he told me that unfortunately my story was not unusual. He said that basically most parents have gone through the same thing. He also told me that the neurologist who tested my daughter for copper and other various tests that others don't normally test for was "one in a million" and had a "head on his shoulders". I wish ALL doctors tested for those things. Some of the tests could explain so many disorders! It's amazing what blood can tell a doctor if you just give it a chance. I worked in the laboratory and I can tell you from personal experience that laboratory tests can sometimes tell the doctor more than the symptoms and physical exams... as a matter of fact, some doctors RELY HEAVILY on the laboratory testing. In many situations it's just a matter of what insurance will cover. That is so sad.
One thing I want to make sure to clear up is that the doctor explained chelation to me. I have been very scared about that and was unwilling to even consider it with my daughter. However, chelation is evidently the only way to get rid of the copper that has accumulated in the body. The zinc acetate is just a way to keep the body from building up any more copper in the body, but it doesn't get rid of what was there before. We are going to discuss that in depth at her first appointment with this doctor. I still feel that I wouldn't want to do something like chelation with doctors who don't know much about it. In other words, I don't want my daughter to be a guinea pig. At least with this doctor, he has treated almost ten pediatric patients so far and that is more than any other in my area. I want to discuss the side-effects and possible scenarios that could occur. After reading Dr. George Brewer's book, I was under the impression that zinc therapy was the first line of therapy for "asymptomatic" patients. That is something I definitely want to discuss with him. Is my daughter technically "asymptomatic" or not? I also want to know how to find out how much copper she has accumulated.
I have a dear friend who is not of my faith, but she reminded me that this experience is definitely a faith-building experience and a testimony that God does answer prayers. It's definitely a testament of my faith. I continue to rely on spiritual guidance and pray that the doctors do the same.
*************************
Looking forward sometimes
means looking back and
realizing that you can
either agonize over
decisions made or learn
from those experiences.
**************************
Wednesday, August 26, 2009
Dealing With Insurance and Billing Update
I posted about my issues with my insurance company not wanting to cover the genetic testing we had to do for our family a long time ago. I also explained how I had to call numerous times and try to figure out what was happening. Our entire family had to be tested for the ATP7B gene mutation due to my daughter having Wilson's Disease. This was done in April of last year. It has now been over a year and we still have not resolved our billing issues with the laboratory. The insurance company pointed their fingers at the billing department at the lab, and the lab pointed their fingers at the insurance company.
The biggest piece of advice I can give you is this: MAKE SURE TO ALWAYS CHECK YOUR INSURANCE CLAIM STATEMENTS!!!! Don't take it for granted that things will be taken care of on their own. I have learned so much in these past few months and one thing I wish I could have changed is that I had paid attention to the statements that came in the mail.... and read the fine print. You are given a limited time to take care of the amount due before you have no recourse to appeal it. Our insurance company gives us 90 days. Believe me, it sounds like a long time, but it isn't.
What do you need to look out for? Make sure that the information is correct. For example, did you REALLY go to Dr. Smith on July 18th and have laboratory work done? Also, do the amounts charged make sense? If the amounts processed seem outrageous you should definitely check. That is what happened in my case. I saw the amount the testing cost and since I worked in a lab I knew that it looked like too much. Of course, I had NO idea how much I was overbilled. Two days ago, I found out that my testing should have cost me $450 PER person total (who knows how much they REALLY charged the hospital). They were trying to bill me for between $10,000 and $13,000 PER person!! I knew that typically hospitals will charge a bit more to the patients to make up for the ones who don't pay. However, this was definitely a case where there was a billing error. I was able to finally reach someone who could tell me how much the testing was supposed to cost me. I was so relieved to finally have an answer! The biggest issue I had was that they were sending my bills to collections and it would potentially harm my good credit. That was definitely my motivation through all of this.
I am not quite ready to exhale, but at least I don't feel like I have a ton of bricks on my shoulders at the moment. I have to share one little tidbit with you all. I want to share what happened and hopefully inspire you to listen to that inner voice that we all tend to ignore at times. This is what happened: I was in the shower and all of a sudden I had the thought, "why don't you call the lab and see if someone can give you the amount that the test cost and how much you should have been billed for each test?" The funny part about that is that I tried numerous times to find out that very thing but was always unsuccessful. Perhaps it was the way I asked the person or maybe it was the person I spoke with. I will never know. However, as soon as I could I called the laboratory that drew the blood (not the ones who actually performed it since they had already told me they couldn't tell me since I wasn't their "client") and asked if there was anyone who could tell me how much a certain laboratory test that my doctor ordered would cost me. I was transferred to the supervisor and she actually called the Mayo Clinic and found out the exact amount the test was supposed to cost. It literally took only five minutes!!! She then told me that I had called the right person and not to worry. The first thing she would do was to get all my bills out of collections. She would then notify the right people and get my bill corrected. I was so relieved! It was definitely an answer to my prayers.
I think we are all blessed with this inner voice inside of us. We just need to listen to it. Sometimes it comes in a whisper. Other times it might come as an email from a dear friend. You just never know how your prayers are answered. Don't be discouraged. Sometimes things take longer than we would like. However, if we are patient and persevere good things do come. It's definitely true what they say, "Good things come to those who wait."
****************************************
I've recently learned that the insurance
company is not always the guilty ones
when it comes to billing problems.
****************************************
The biggest piece of advice I can give you is this: MAKE SURE TO ALWAYS CHECK YOUR INSURANCE CLAIM STATEMENTS!!!! Don't take it for granted that things will be taken care of on their own. I have learned so much in these past few months and one thing I wish I could have changed is that I had paid attention to the statements that came in the mail.... and read the fine print. You are given a limited time to take care of the amount due before you have no recourse to appeal it. Our insurance company gives us 90 days. Believe me, it sounds like a long time, but it isn't.
What do you need to look out for? Make sure that the information is correct. For example, did you REALLY go to Dr. Smith on July 18th and have laboratory work done? Also, do the amounts charged make sense? If the amounts processed seem outrageous you should definitely check. That is what happened in my case. I saw the amount the testing cost and since I worked in a lab I knew that it looked like too much. Of course, I had NO idea how much I was overbilled. Two days ago, I found out that my testing should have cost me $450 PER person total (who knows how much they REALLY charged the hospital). They were trying to bill me for between $10,000 and $13,000 PER person!! I knew that typically hospitals will charge a bit more to the patients to make up for the ones who don't pay. However, this was definitely a case where there was a billing error. I was able to finally reach someone who could tell me how much the testing was supposed to cost me. I was so relieved to finally have an answer! The biggest issue I had was that they were sending my bills to collections and it would potentially harm my good credit. That was definitely my motivation through all of this.
I am not quite ready to exhale, but at least I don't feel like I have a ton of bricks on my shoulders at the moment. I have to share one little tidbit with you all. I want to share what happened and hopefully inspire you to listen to that inner voice that we all tend to ignore at times. This is what happened: I was in the shower and all of a sudden I had the thought, "why don't you call the lab and see if someone can give you the amount that the test cost and how much you should have been billed for each test?" The funny part about that is that I tried numerous times to find out that very thing but was always unsuccessful. Perhaps it was the way I asked the person or maybe it was the person I spoke with. I will never know. However, as soon as I could I called the laboratory that drew the blood (not the ones who actually performed it since they had already told me they couldn't tell me since I wasn't their "client") and asked if there was anyone who could tell me how much a certain laboratory test that my doctor ordered would cost me. I was transferred to the supervisor and she actually called the Mayo Clinic and found out the exact amount the test was supposed to cost. It literally took only five minutes!!! She then told me that I had called the right person and not to worry. The first thing she would do was to get all my bills out of collections. She would then notify the right people and get my bill corrected. I was so relieved! It was definitely an answer to my prayers.
I think we are all blessed with this inner voice inside of us. We just need to listen to it. Sometimes it comes in a whisper. Other times it might come as an email from a dear friend. You just never know how your prayers are answered. Don't be discouraged. Sometimes things take longer than we would like. However, if we are patient and persevere good things do come. It's definitely true what they say, "Good things come to those who wait."
****************************************
I've recently learned that the insurance
company is not always the guilty ones
when it comes to billing problems.
****************************************
Tuesday, August 25, 2009
Galzin Therapy for Wilson's Disease
Our daughter who is 6 years old was not on any drug therapy until recently. The only thing doctors suggested for us was liver biopsy and consequent chelation therapy if the numbers were high enough. The problem with this mode of treatment is that they are basically waiting for the patient to get "sick" before treating. This is the equivalent of a doctor waiting for a diabetic to lose their kidney function before starting insulin. Luckily, as I have said numerous times, I have been surrounded by guardian angels who have guided me through the process of keeping my daughter well. I am so thankful that I did not ignore the warnings and counsel that were given to me.
The main reason for this post was to update you all on how my daughter is doing on this new treatment and to offer some advice. First of all, she is taking 25 mg. of Galzin (Zinc Acetate) three times a day. The biggest challenge for us is making sure that her stomach is empty. She has a big appetite and usually eats mini-meals throughout the day. Also, when school started that presented YET another challenge for us. How did I ensure that she took her medicine on time and on an empty stomach when they have snack time at about the time she is supposed to take her medicine? I went to the school and talked to the nurse. She was so sweet and gave me a great idea. She told me that I should send a special water bottle with her to school and that way she could sip water during snack time. This was also a good way to ensure that she didn't drink tap water. We found out recently that the copper level in our water is higher than it should be for her. We try to give her only filtered water at home.
I want to stress an important point right now. While we were trying to get a diagnosis years ago and the doctors ignored my concerns, they did a random urine copper on my daughter and the results were normal. A year later they did the 24 hour urine copper and again it was normal (in the 40's range). However, right before she started taking the zinc acetate her 24 hour urine copper was 68 which is a little higher than normal. NOW, after only a month of medication, she is in the normal range. Her latest value was 54. We are so excited! I urge parents to not ignore their instincts. I did not know as much THEN as I know NOW. After reading Dr. Brewer's book I understand that in asymptomatic patients the results can often be misleading. EARLY INTERVENTION is the key. You MUST start treatment right away. The longer you wait, the more damage there will be. The more damage there is, the harder it will be for the patient to recover. It is possible to recover if caught early enough. It is possible for a patient with Wilson's Disease to live a long and healthy life. The biggest mistake anyone can make is to have a "wait and see" attitude with Wilson's.
So far, my daughter has had no side-effects on Galzin and it is definitely working for her. I am so glad we were able to avoid the chelation therapy and liver biopsy. I am still trying to learn as much as I can about how the 24 hour urine copper range is used to monitor Galzin. According to Dr. George Brewer, the "normal level of urine copper of 20-50 micrograms per 24 hours is not reached for many years, if it is reached at all, because of the extensive body loading of copper in Wilson's disease." I guess a value of 54 is not too bad after just a month of treatment. That is very reassuring for me.
**********************************
Don't delay....start today!!!!!!!
**********************************
The main reason for this post was to update you all on how my daughter is doing on this new treatment and to offer some advice. First of all, she is taking 25 mg. of Galzin (Zinc Acetate) three times a day. The biggest challenge for us is making sure that her stomach is empty. She has a big appetite and usually eats mini-meals throughout the day. Also, when school started that presented YET another challenge for us. How did I ensure that she took her medicine on time and on an empty stomach when they have snack time at about the time she is supposed to take her medicine? I went to the school and talked to the nurse. She was so sweet and gave me a great idea. She told me that I should send a special water bottle with her to school and that way she could sip water during snack time. This was also a good way to ensure that she didn't drink tap water. We found out recently that the copper level in our water is higher than it should be for her. We try to give her only filtered water at home.
I want to stress an important point right now. While we were trying to get a diagnosis years ago and the doctors ignored my concerns, they did a random urine copper on my daughter and the results were normal. A year later they did the 24 hour urine copper and again it was normal (in the 40's range). However, right before she started taking the zinc acetate her 24 hour urine copper was 68 which is a little higher than normal. NOW, after only a month of medication, she is in the normal range. Her latest value was 54. We are so excited! I urge parents to not ignore their instincts. I did not know as much THEN as I know NOW. After reading Dr. Brewer's book I understand that in asymptomatic patients the results can often be misleading. EARLY INTERVENTION is the key. You MUST start treatment right away. The longer you wait, the more damage there will be. The more damage there is, the harder it will be for the patient to recover. It is possible to recover if caught early enough. It is possible for a patient with Wilson's Disease to live a long and healthy life. The biggest mistake anyone can make is to have a "wait and see" attitude with Wilson's.
So far, my daughter has had no side-effects on Galzin and it is definitely working for her. I am so glad we were able to avoid the chelation therapy and liver biopsy. I am still trying to learn as much as I can about how the 24 hour urine copper range is used to monitor Galzin. According to Dr. George Brewer, the "normal level of urine copper of 20-50 micrograms per 24 hours is not reached for many years, if it is reached at all, because of the extensive body loading of copper in Wilson's disease." I guess a value of 54 is not too bad after just a month of treatment. That is very reassuring for me.
**********************************
Don't delay....start today!!!!!!!
**********************************
Friday, August 21, 2009
I Can't Be The Only One
There are three questions I want answered at this very moment:
#1: Am I the only one who cares about what books my child reads at school?
#2: Am I the only one who cares about what movies my child watches at school?
#3: Am I the only one who feels that values and morals are going down the drain?
When my oldest went to middle school he had to read a few books that were frankly offensive and vulgar. I was shocked at the subject matter and the language. I already have discussed in previous posts how tough middle school can be and adding that issue was enough to give me an ulcer! However, parents have NO say in the books that are in the curriculum and what they watch at school. Parents have NO control over any of the subjects they decide to add or delete. It's no wonder more and more parents are deciding to home school. It definitely makes sense to me.
I have recently learned that high school is not any different. The books they read do not get any better and the subject matter can be gruesome and offensive. I don't want to offend anyone, but I feel that in order to get my message across you have to read what I am referring to. The following is a poem that a movie entitled "Then There Were None" (an Agatha Christie novel) was based on. This is how it goes:
Ten little Indian boys went out to dine;
One chocked his self and then there were nine.
Nine Indian boys sat up very late;
One overslept himself then there were eight.
Eight Indian boys traveling in Devon;
One said he'd stay there then there were seven.
Seven Indian boys chopping up sticks;
One chopped himself in halves then there were six.
Six Indian boys playing with a hive;
A bumble-bee stung one then there were five.
Five Indian boys going in for law;
One got in Chancery then there were four.
Four Indian boys going out to sea;
A red herring swallowed one then there were three.
Three Indian boys walking in the zoo;
A big bear hugged one then there were two.
Two Indian boys sitting in the sun;
One got all frizzled up then there was one.
One Indian boy left all alone;
He went and hanged himself and then there were none
The summer reading list included the book: "And Then There Were None" by Agatha Christie. http://www.bookrags.com/notes/none/SUM.html This website has the synopsis of the book. It is a very interesting story and I, as an adult, would probably enjoy reading it. However, why do 9th graders need to read this book? What does this plot teach children? They see and hear enough violence on the television and nightly news. School should be a place where they can get away from those things. The book is basically about a man who invites eight strangers to an island where they are killed one by one using the methods in the poem. In the end they ALL die. Evidently, all eight strangers had killed someone and the man who kills everyone wanted justice and he arranged the death of all the people. Again... I ask you what is the purpose of reading this novel?
I guess the reason I am so upset about the situation is that they no longer allow prayer in school. I bet if my child decided to bring his scriptures and read them in class there would probably be something "wrong" with that. I think there is definitely something wrong with that!! What kind of future can we expect if we are teaching our children to become desensitized to violence and gore? Where are the values and morals being taught? I do MY part at home. However, I also expect schools to maintain a much higher standard and I believe that parents should have the right to decide what their children can read or watch in school. Parents cannot remain complacent about what is happening in schools. We have to voice our opinions and let our concerns be heard. If we let the government have control over our children's education without our input, then we might as well let government into our homes and raise our children.... thus having control over our children's minds and lives.
*************************************
Don't be afraid to call and talk to
the principal or director of your
school and voice your opinion.
If enough people do that.... perhaps
change is possible. If we sit back
and just let it happen then we might
just one day "wake up" and see that
it's too late.
*************************************
#1: Am I the only one who cares about what books my child reads at school?
#2: Am I the only one who cares about what movies my child watches at school?
#3: Am I the only one who feels that values and morals are going down the drain?
When my oldest went to middle school he had to read a few books that were frankly offensive and vulgar. I was shocked at the subject matter and the language. I already have discussed in previous posts how tough middle school can be and adding that issue was enough to give me an ulcer! However, parents have NO say in the books that are in the curriculum and what they watch at school. Parents have NO control over any of the subjects they decide to add or delete. It's no wonder more and more parents are deciding to home school. It definitely makes sense to me.
I have recently learned that high school is not any different. The books they read do not get any better and the subject matter can be gruesome and offensive. I don't want to offend anyone, but I feel that in order to get my message across you have to read what I am referring to. The following is a poem that a movie entitled "Then There Were None" (an Agatha Christie novel) was based on. This is how it goes:
Ten little Indian boys went out to dine;
One chocked his self and then there were nine.
Nine Indian boys sat up very late;
One overslept himself then there were eight.
Eight Indian boys traveling in Devon;
One said he'd stay there then there were seven.
Seven Indian boys chopping up sticks;
One chopped himself in halves then there were six.
Six Indian boys playing with a hive;
A bumble-bee stung one then there were five.
Five Indian boys going in for law;
One got in Chancery then there were four.
Four Indian boys going out to sea;
A red herring swallowed one then there were three.
Three Indian boys walking in the zoo;
A big bear hugged one then there were two.
Two Indian boys sitting in the sun;
One got all frizzled up then there was one.
One Indian boy left all alone;
He went and hanged himself and then there were none
The summer reading list included the book: "And Then There Were None" by Agatha Christie. http://www.bookrags.com/notes/none/SUM.html This website has the synopsis of the book. It is a very interesting story and I, as an adult, would probably enjoy reading it. However, why do 9th graders need to read this book? What does this plot teach children? They see and hear enough violence on the television and nightly news. School should be a place where they can get away from those things. The book is basically about a man who invites eight strangers to an island where they are killed one by one using the methods in the poem. In the end they ALL die. Evidently, all eight strangers had killed someone and the man who kills everyone wanted justice and he arranged the death of all the people. Again... I ask you what is the purpose of reading this novel?
I guess the reason I am so upset about the situation is that they no longer allow prayer in school. I bet if my child decided to bring his scriptures and read them in class there would probably be something "wrong" with that. I think there is definitely something wrong with that!! What kind of future can we expect if we are teaching our children to become desensitized to violence and gore? Where are the values and morals being taught? I do MY part at home. However, I also expect schools to maintain a much higher standard and I believe that parents should have the right to decide what their children can read or watch in school. Parents cannot remain complacent about what is happening in schools. We have to voice our opinions and let our concerns be heard. If we let the government have control over our children's education without our input, then we might as well let government into our homes and raise our children.... thus having control over our children's minds and lives.
*************************************
Don't be afraid to call and talk to
the principal or director of your
school and voice your opinion.
If enough people do that.... perhaps
change is possible. If we sit back
and just let it happen then we might
just one day "wake up" and see that
it's too late.
*************************************
Monday, August 17, 2009
When Life Gives You Lemons....
I found out a very good piece of information today that I wanted to share with all of you out there who have children with special needs. If you have any plans to go to Disney in Florida then this information could save you a lot of time, hassle, and more importantly... your sanity!
I met a lady today who has a child with autism. She told me that when they went to Disney this summer they went directly to the visitor's center and showed them the paperwork with her son's diagnosis. The people at Disney then gave the family 4 passes that would enable them to go directly to the front of the line and not have to wait!! Yes... you heard correctly.... NO WAIT! I asked her if this was for every ride in the park and she said it was. I was so excited!!! Last November we went to Disney and we had to wait for hours at every ride. Even with the "Fastpass" it was a challenge getting into the rides because a lot of the rides we wanted to ride did not have that option. We ended up having to split up a few times to coordinate the tickets.
Hey....I've always said that when life gives you lemons, make lemonade. Why not? I have definitely deserved SOME relief in my life. I think I hear Disney calling my name!
********************************
M-I-C-K-E-Y.....M-O-U-S-E.......
********************************
I met a lady today who has a child with autism. She told me that when they went to Disney this summer they went directly to the visitor's center and showed them the paperwork with her son's diagnosis. The people at Disney then gave the family 4 passes that would enable them to go directly to the front of the line and not have to wait!! Yes... you heard correctly.... NO WAIT! I asked her if this was for every ride in the park and she said it was. I was so excited!!! Last November we went to Disney and we had to wait for hours at every ride. Even with the "Fastpass" it was a challenge getting into the rides because a lot of the rides we wanted to ride did not have that option. We ended up having to split up a few times to coordinate the tickets.
Hey....I've always said that when life gives you lemons, make lemonade. Why not? I have definitely deserved SOME relief in my life. I think I hear Disney calling my name!
********************************
M-I-C-K-E-Y.....M-O-U-S-E.......
********************************
Saturday, August 15, 2009
Karate Therapy?
Karate is definitely not on the top of many parent's list as a "therapy" for their child. Why would you expose your child to fighting and aggression? Well.... I am about to debunk a bunch of myths concerning karate and to tell you all that you might just want to try karate. It might surprise you what YOU and your child will learn.
Myth #1: Karate will encourage my child to be aggressive.
Actually karate is considered an "art" and when they start off they will learn moves and "forms" that are associated with the specific martial art they are learning. Your child will probably be disappointed that they won't be actually fighting for quite some time. The main point they will learn is that karate is for protection and not for starting fights. They will learn that the best way to "win" a fight is to avoid one in the first place.
Myth #2: Karate is a very dangerous sport.
Karate is safer than any other sport out there. My daughter got hurt while playing indoor soccer. The main reason was that she didn't have any protection except on her shins. When your child starts to fight in tournaments, it will be when they are in the higher belts and they will be wearing all the appropriate protective gear.
Myth #3: Girls wouldn't benefit from taking karate.
This is so wrong! I think girls should be the first ones to take karate. When I was 12 years old I came home with a black eye from a bully hurting me on the bus. The following day my dad enrolled me in karate. I gained so much confidence and I was never bullied again! Girls have to learn how to protect themselves. They will not only learn vital skills in karate, but gain the self-confidence they need so that they never have to feel like a victim.
Myth #4: My child has ADHD and so he wouldn't be able to handle karate.
The fact is that karate can HELP kids with ADHD. In karate they learn how to focus and pay attention. The repetition and structure of karate is also good for a lot of kids with attention deficits. I have read in numerous sources that they encourage parents to enroll their children in karate to help deal with ADHD. I believe it's definitely something that should be explored.
Of course, I am a bit biased since I have taken karate and now have my children enrolled in it. I have already seen the changes in my children since the first day they started. I am looking forward to seeing some great things happen in the next few months. They look forward to going each day and I have to admit that I enjoy it too! I have only been twice and have learned so much. It is definitely empowering and I hope to stay with it for as long as my children do. It's fun going to classes together. They definitely enjoy seeing their mommy out there on the mat too.
The life lessons that children learn from karate are too numerous to count. There are many programs out there and I encourage you to look at all of them. They are all very different and some are more structured and regimented than others. You know your child and their limitations. I enrolled my children in a very loving, caring, and nurturing environment. It's one of the few places in the country that teaches "Stranger Danger" and is endorsed by the city police department. I love the instructors and the parents are all very supportive. I definitely feel it's the right place for MY kids. I feel blessed to have found this program. It's worth every penny!
*******************************************
Don't take MY word for it... try it out and
see for yourself.
*******************************************
Myth #1: Karate will encourage my child to be aggressive.
Actually karate is considered an "art" and when they start off they will learn moves and "forms" that are associated with the specific martial art they are learning. Your child will probably be disappointed that they won't be actually fighting for quite some time. The main point they will learn is that karate is for protection and not for starting fights. They will learn that the best way to "win" a fight is to avoid one in the first place.
Myth #2: Karate is a very dangerous sport.
Karate is safer than any other sport out there. My daughter got hurt while playing indoor soccer. The main reason was that she didn't have any protection except on her shins. When your child starts to fight in tournaments, it will be when they are in the higher belts and they will be wearing all the appropriate protective gear.
Myth #3: Girls wouldn't benefit from taking karate.
This is so wrong! I think girls should be the first ones to take karate. When I was 12 years old I came home with a black eye from a bully hurting me on the bus. The following day my dad enrolled me in karate. I gained so much confidence and I was never bullied again! Girls have to learn how to protect themselves. They will not only learn vital skills in karate, but gain the self-confidence they need so that they never have to feel like a victim.
Myth #4: My child has ADHD and so he wouldn't be able to handle karate.
The fact is that karate can HELP kids with ADHD. In karate they learn how to focus and pay attention. The repetition and structure of karate is also good for a lot of kids with attention deficits. I have read in numerous sources that they encourage parents to enroll their children in karate to help deal with ADHD. I believe it's definitely something that should be explored.
Of course, I am a bit biased since I have taken karate and now have my children enrolled in it. I have already seen the changes in my children since the first day they started. I am looking forward to seeing some great things happen in the next few months. They look forward to going each day and I have to admit that I enjoy it too! I have only been twice and have learned so much. It is definitely empowering and I hope to stay with it for as long as my children do. It's fun going to classes together. They definitely enjoy seeing their mommy out there on the mat too.
The life lessons that children learn from karate are too numerous to count. There are many programs out there and I encourage you to look at all of them. They are all very different and some are more structured and regimented than others. You know your child and their limitations. I enrolled my children in a very loving, caring, and nurturing environment. It's one of the few places in the country that teaches "Stranger Danger" and is endorsed by the city police department. I love the instructors and the parents are all very supportive. I definitely feel it's the right place for MY kids. I feel blessed to have found this program. It's worth every penny!
*******************************************
Don't take MY word for it... try it out and
see for yourself.
*******************************************
Monday, August 10, 2009
When Do I Need to Worry?
I feel the need to post this at this time since school is back in session. There are so many things that parents worry about. Some of those things are legitimate concerns, while others stem from unrealistic expectations that society and sometimes teachers put on them. Let me preface the following by saying that these "milestones" are intended for children who are past the age of toddlerhood. I have made numerous posts in the past about what to look out for in babies and toddlers. However, toddlers are too young to categorize. It has been my experience that with toddlers there is such a wide range of development that it would take a book to cover all the milestones. Also, the milestones are so vague that they can span months and some overlap. It's definitely more complex.
Social Milestones:
Not all children are going to be social butterflies. Some kids are naturally shy and they don't want to be the center of attention. This could EASILY be misinterpreted as "issues" that a child may not have. For example, if your child is shy and afraid to speak in public then reading out loud in a classroom environment may not work for her. This might lead the teacher to think that the child has a reading problem when in fact it's a shyness problem. My point here is that you know your child. If your gut feeling tells you that he/she is not happy then you definitely need to get testing and confirmation. Otherwise, don't worry about your child and instead help the situation by being the supportive and loving parent you are. These are SOME of the early signs of problems in young children that need to be checked out:
not wanting to be touched or reacting to touch in a very negative manner, being sensitive to sounds or colors, not wanting to eat but a VERY limited diet, playing with toys in a unique fashion such as always lining them up or being fixated on a particular part of a toy versus playing with it in an appropriate manner, acting depressed the majority of the time, and my favorite....numerous temper tantrums.
Physical Milestones:
Not all children are going to grow up the same. My children are nicknamed "Amazon kids" and they are tall for their age. I have a friend whose kids are all very tiny until they reach preteen years and then they grow like weeds. As long as your child is steadily growing and gaining weight then you have nothing to worry about. If you take your child to a physician regularly they check both weight and height. They usually will plot the results onto a graph and if there are any problems they will usually let the parents know. If you have any concerns then speak up at your child's appointment. These are a few of the things I would be concerned about:
if your child has ANY yellowing or changes in skin color, any changes in bowel movements for an extended period of time, bloating of stomach, if your child is not getting enough sleep, walking on tip toes, poor coordination that leads to frequent accidents, and ANY regression in speech or motor skills.
Emotional Milestones:
This is the most complex of all issues. How do you determine what is "normal" emotional health in a kid? In MY opinion, it all depends on circumstances. If a child is living in a normal environment with no major changes and two loving parents then you would expect normal development. However, major changes such as the death of a loved one or moving frequently from one place to another can cause certain behaviors that you would not ordinarily see in most kids. Everyone deals with stress in their own way. This is especially true with children. As a parent, you need to provide every opportunity for your child to develop emotionally. It is important for your child to have friends. It is also important for your child to know they are loved and to gain self-confidence which will in turn equal self-worth. These are a few things I would worry about:
preferring isolation from friends and/or family, hurting themselves and/or others, not able to express love, not able to make and more importantly KEEP friends, doesn't seem to worry about consequences, lack of empathy, poor or no eye contact, irrational fears, and not being able to cope with any change.
I have a "three strikes" theory. If you have at least three developmental things that you are concerned about with your child then you should definitely see a professional and find out what is going on. This doesn't mean that there IS something wrong, but it's worth the time checking it out. Those of you who are worried about being too paranoid remember this one thing: go with your gut. If your gut tells you that you should see a doctor then do it! Don't wait for a doctor to tell YOU something is wrong. Parents are usually the first people to notice when something is wrong. My last thought I want to share is that all of you need to remember that a child is not the finished product. They WILL grow up and even if something IS wrong, that doesn't mean that they are doomed. There are remedies and solutions to many developmental issues. Things do get better and the sooner they are found, the sooner they can be fixed.
****************************************
When do we need to worry? Never!
When do we need to take action? Always!
****************************************
Social Milestones:
Not all children are going to be social butterflies. Some kids are naturally shy and they don't want to be the center of attention. This could EASILY be misinterpreted as "issues" that a child may not have. For example, if your child is shy and afraid to speak in public then reading out loud in a classroom environment may not work for her. This might lead the teacher to think that the child has a reading problem when in fact it's a shyness problem. My point here is that you know your child. If your gut feeling tells you that he/she is not happy then you definitely need to get testing and confirmation. Otherwise, don't worry about your child and instead help the situation by being the supportive and loving parent you are. These are SOME of the early signs of problems in young children that need to be checked out:
not wanting to be touched or reacting to touch in a very negative manner, being sensitive to sounds or colors, not wanting to eat but a VERY limited diet, playing with toys in a unique fashion such as always lining them up or being fixated on a particular part of a toy versus playing with it in an appropriate manner, acting depressed the majority of the time, and my favorite....numerous temper tantrums.
Physical Milestones:
Not all children are going to grow up the same. My children are nicknamed "Amazon kids" and they are tall for their age. I have a friend whose kids are all very tiny until they reach preteen years and then they grow like weeds. As long as your child is steadily growing and gaining weight then you have nothing to worry about. If you take your child to a physician regularly they check both weight and height. They usually will plot the results onto a graph and if there are any problems they will usually let the parents know. If you have any concerns then speak up at your child's appointment. These are a few of the things I would be concerned about:
if your child has ANY yellowing or changes in skin color, any changes in bowel movements for an extended period of time, bloating of stomach, if your child is not getting enough sleep, walking on tip toes, poor coordination that leads to frequent accidents, and ANY regression in speech or motor skills.
Emotional Milestones:
This is the most complex of all issues. How do you determine what is "normal" emotional health in a kid? In MY opinion, it all depends on circumstances. If a child is living in a normal environment with no major changes and two loving parents then you would expect normal development. However, major changes such as the death of a loved one or moving frequently from one place to another can cause certain behaviors that you would not ordinarily see in most kids. Everyone deals with stress in their own way. This is especially true with children. As a parent, you need to provide every opportunity for your child to develop emotionally. It is important for your child to have friends. It is also important for your child to know they are loved and to gain self-confidence which will in turn equal self-worth. These are a few things I would worry about:
preferring isolation from friends and/or family, hurting themselves and/or others, not able to express love, not able to make and more importantly KEEP friends, doesn't seem to worry about consequences, lack of empathy, poor or no eye contact, irrational fears, and not being able to cope with any change.
I have a "three strikes" theory. If you have at least three developmental things that you are concerned about with your child then you should definitely see a professional and find out what is going on. This doesn't mean that there IS something wrong, but it's worth the time checking it out. Those of you who are worried about being too paranoid remember this one thing: go with your gut. If your gut tells you that you should see a doctor then do it! Don't wait for a doctor to tell YOU something is wrong. Parents are usually the first people to notice when something is wrong. My last thought I want to share is that all of you need to remember that a child is not the finished product. They WILL grow up and even if something IS wrong, that doesn't mean that they are doomed. There are remedies and solutions to many developmental issues. Things do get better and the sooner they are found, the sooner they can be fixed.
****************************************
When do we need to worry? Never!
When do we need to take action? Always!
****************************************
Sunday, August 9, 2009
Top Ten Ways to Maintain Your Sanity
People are always asking me how I maintain my sanity with everything going on in my life. I compiled this "top 10" list for fun and thought I would share it with all of you.... enjoy!
#10) Must make sure to take time out for yourself. This is so important especially for moms.
You can't have a happy home unless YOU are happy.
#9) Don't live beyond your means. It is a proven fact that money matters are #1 on list of stress among couples. If you can keep debt down then that is one less thing to worry about.
#8) Treasure those true friends, and learn to know the difference. There are those people who come and go out of our lives and those who stay with us through the thick and thin.....THOSE are the ones you want to hold on to. No money in the world can buy that.
#7) Learn from your mistakes. We are ALL going to make them. If we can learn from them then we can actually turn it into a blessing in our lives.
#6) You have to maintain a good sense of humor. Learn to laugh at yourself. Learn to laugh with others. It's been said that people who laugh at least once a day will extend their life by years!
#5) Learn how and when to say, "No!" That is such a hard thing for some people. I know it is for me. However, you will quickly go insane if you overextend yourself and your time.
#4) Limit your t.v. time. All the news and violence on t.v. is enough to make ANYONE crazy!
#3) Join support group for whatever ails you.... there is even support groups for losing weight!
#2) Discover what your talents are and do what you can to cultivate those talents.
#1) My top way to maintain your sanity is to learn the message in the Serenity Prayer: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
*******************************************
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
(Proverbs 3, 5-6)
*******************************************
#10) Must make sure to take time out for yourself. This is so important especially for moms.
You can't have a happy home unless YOU are happy.
#9) Don't live beyond your means. It is a proven fact that money matters are #1 on list of stress among couples. If you can keep debt down then that is one less thing to worry about.
#8) Treasure those true friends, and learn to know the difference. There are those people who come and go out of our lives and those who stay with us through the thick and thin.....THOSE are the ones you want to hold on to. No money in the world can buy that.
#7) Learn from your mistakes. We are ALL going to make them. If we can learn from them then we can actually turn it into a blessing in our lives.
#6) You have to maintain a good sense of humor. Learn to laugh at yourself. Learn to laugh with others. It's been said that people who laugh at least once a day will extend their life by years!
#5) Learn how and when to say, "No!" That is such a hard thing for some people. I know it is for me. However, you will quickly go insane if you overextend yourself and your time.
#4) Limit your t.v. time. All the news and violence on t.v. is enough to make ANYONE crazy!
#3) Join support group for whatever ails you.... there is even support groups for losing weight!
#2) Discover what your talents are and do what you can to cultivate those talents.
#1) My top way to maintain your sanity is to learn the message in the Serenity Prayer: God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
*******************************************
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
(Proverbs 3, 5-6)
*******************************************
Sunday, July 26, 2009
The Wilson's Disease "Bible" (Part II)
Understanding how to treat Wilson's Disease is the key. The rest of the book discusses management and treatment. The last chapter discusses the history and future of Wilson's. That was my favorite part to read. I had no idea how recent testing and treatment had been made available. It was definitely a bitter-sweet moment when I realized that if my oldest son would have had Wilson's Disease (being born in 1996), the specific genetic test that ulitimately diagnosed my daughter would not have been available!!
Chapter 5 explains management and what is important and what is not. This chapter answered a lot of questions for me. He suggests that "a low copper diet" is not necessary...especially after patient is on anticopper drugs. He also cautions that drinking water is actually more of a risk, particularly during the initial therapy. How does the doctor choose the drug? This chapter answers that question. What about monitoring? That is also answered. He covers diet and how there are only two things that he cautions patients about: liver and shellfish. He explains that "we have remeasured the copper level in most of the important foods, and find that the content of copper in foods listed in previous tables were too high..." I thought that was quite interesting. He suggests testing your drinking water and if the copper level is more than 0.1 PPM (parts per million) then getting a filter or finding alternative water sources. Unfortunately, in our area the copper level in our water is above the recommended level for my daughter so we got a Brita filter. FYI: Brita filters (the ones that mount on the faucet) DO filter copper.
Chapter 6 discusses the treatment of patients with liver disease. This is the type my daughter could have had if she were not treated, and so I was especially curious to read about the types of symptoms to look out for and laboratory results that pertain to this manifestation of WD. He goes over liver transplant and that was quite scary for me to read. He stresses that doctors should NOT do a liver transplant as long as medical therapy is doing the job. He DOES explain when liver transplant SHOULD be done and even offers a recommended anticopper therapy for those patients awaiting a liver transplant.
Chapter 7 covers treatment of patients with neurologic and/or psychiatric disease. He cautions doctors against using penicillamine therapy for these type of patients. He says that symptoms will actually get worse in about 50% of patients.... and worse yet, the risk of permanent worsening is about 25%! Dr. Brewer suggests using Tetrathiomolybdate for these patients and explains in depth why.
Chapter 8 discusses maintenance therapy. Maintenance therapy is what happens after you get rid of the copper toxicity and continues for the rest of the patient's life. He covers the objectives and methods of maintenance therapy. Dr. Brewer definitely prefers zinc therapy and explains in detail all about it. He offers graphs and lots of information that support his findings. This chapter is perfect for any patient who wants to know how zinc works and how to monitor it throughout his/her lifetime.
Chapter 9 was the chapter that I anticipated the most. It covers the therapy for presymptomatic, pediatric, and pregnant patients. Since my daughter is a pediatric patient and will one day (hopefully) want to have children, I anxiously read through this chapter hopeful that she would have the opportunity to bear children. According to Dr. Brewer there is hope for my daughter. He emphasizes the need to continue anticopper therapy throughout the pregnancy and that with the zinc acetate there is less risk of teratogenic (disruptive to the development)effect on the fetus than penicillamine (which used to be the only choice for patients). This is something that she will definitely have to prayerfully decide. According to Dr. Brewer zinc is the safest of all the drugs. The biggest danger is the mother deciding to halt her medication out of fear of harm to her unborn.... that would definitely be tragic.
In Chapter 10 Dr. Brewer discusses the risk factors during maintenance therapy and the prognosis of Wilson's patients. The biggest risk, believe it or not, is POOR COMPLIANCE! This is especially true in younger patients and/or asymptomatic ones. He says, "It is always shocking to me that compliance is not almost perfect in this disease, given the availability of an effective, oral, non-toxic medication, such as zinc, and given the severity of the alternative." That basically sums it up. However, he goes over some of the things that CAN happen to patients when certain symptoms do not improve and how accidents can be another issue. This is especially true in patients with neuroligical symptoms. For example, a patient with severe depression might commit suicide. That is something that doctors need to be aware of. His final sentence in this chapter is my favorite one: "The bottom line that should be conveyed is thta if you're going to have a genetic disease, this is a good one to have because it is so treatable."
Chapter 11 covers the disease pathogenesis and genetics. Although I HATE what this disease does, I have to admit that the genetics and the disease itself is rather fascinating. I never realized how important copper truly was until I had to read all about it. Why don't doctors test it more often? That is definitely a question to ask. There are still many things we do not know about the genetic defect of the ATP7B gene and how many mutations there are. According to this chapter, over 170 mutations have now been described!! There is an interesting table that shows the mutations in various populations. It is suggested that depending on the mutation that determines the age of onset of the disease and how it manifests itself. Perhaps one day they will be able to find a way to test for that. I am sure it is not too far in the future.
Chapter 12 discusses disease pathology. This chapter answers the question of how excess copper causes damage to cells and organs. This is the chapter that will enlighten you to how important copper is and why too much and not good. This explains why the liver is the primary organ that is affected. The next organ that usually affected is the brain since it is the next most sensitive organ. He discusses the female reproductive system, skeletal system, kidneys, eyes, and heart. It is important to note that Dr. Brewer states: "In the past, the disease was likely more advanced when diagnosed. This probably accounts for many of the pathological and clinical differences reported in the past compared to more modern experience. Today we almost never see the kinds of renal, skeletal, and cardiac abnormalities that were commonly reported two or three decades ago."
The final chapter is one that covers the history and milestones of Wilson's Disease. It is interesting to see how the discovery of the disease came about. It all started with Dr. Wilson who saw several patients with liver disease and then Kayser and Fleischer observed corneal copper deposits in the eyes of another group of patients. All of this happened in the early 1900's. Eventually the copper connection was made and the disease was discovered. It is interesting to note that in 1977 Dr. Brewer observed that zinc therapy in sickle cell anemia produced copper deficiency. This is what led to the idea of using zinc for therapy. It wasn't until 1993 that the genetic cause of Wilson's was discovered. In 1997 zinc therapy was finally approved by the FDA. One thing that was interesting to note was that just because a patient has the harmful mutation of the ATP7B gene, that doesn't mean that the person will reach the full penetrance of the clinical disorder. Therefore it is not ever 100%. Some patients might actually have a milder expression of the gene. Dr. Brewer also mentions that he had two patients who were vegetarians and adequately controlled the disease. He says that the mechanism of this is that copper is less thoroughly absorbed from vegetable foods than from meat. He cautions that he does not recommend a vegetarian diet as a therapeutic approach because it may not work in some patients. His main point is that diet can be a factor in age of onset and other manifestations.
The most important part of the book is the challenges that Dr. Brewer expresses. He basically says that if a doctor doesn't even consider Wilson's in a patient then it won't be diagnosed. If it isn't diagnosed then it won't be treated. If a patient is not treated.... the end is not good. However, the future looks bright. There are already new and better treatment options. The screening methods are improving. I know that there will be advancements in the field of genetics that will help with testing and screening. As we better understand the role of ATP7B in regulating copper then we can better understand how mutation of this gene intereferes with this function. That will ultimately lead to more patients being diagnosed and less ending up with tragic endings.
***********************************
The future definitely looks bright!
***********************************
Chapter 5 explains management and what is important and what is not. This chapter answered a lot of questions for me. He suggests that "a low copper diet" is not necessary...especially after patient is on anticopper drugs. He also cautions that drinking water is actually more of a risk, particularly during the initial therapy. How does the doctor choose the drug? This chapter answers that question. What about monitoring? That is also answered. He covers diet and how there are only two things that he cautions patients about: liver and shellfish. He explains that "we have remeasured the copper level in most of the important foods, and find that the content of copper in foods listed in previous tables were too high..." I thought that was quite interesting. He suggests testing your drinking water and if the copper level is more than 0.1 PPM (parts per million) then getting a filter or finding alternative water sources. Unfortunately, in our area the copper level in our water is above the recommended level for my daughter so we got a Brita filter. FYI: Brita filters (the ones that mount on the faucet) DO filter copper.
Chapter 6 discusses the treatment of patients with liver disease. This is the type my daughter could have had if she were not treated, and so I was especially curious to read about the types of symptoms to look out for and laboratory results that pertain to this manifestation of WD. He goes over liver transplant and that was quite scary for me to read. He stresses that doctors should NOT do a liver transplant as long as medical therapy is doing the job. He DOES explain when liver transplant SHOULD be done and even offers a recommended anticopper therapy for those patients awaiting a liver transplant.
Chapter 7 covers treatment of patients with neurologic and/or psychiatric disease. He cautions doctors against using penicillamine therapy for these type of patients. He says that symptoms will actually get worse in about 50% of patients.... and worse yet, the risk of permanent worsening is about 25%! Dr. Brewer suggests using Tetrathiomolybdate for these patients and explains in depth why.
Chapter 8 discusses maintenance therapy. Maintenance therapy is what happens after you get rid of the copper toxicity and continues for the rest of the patient's life. He covers the objectives and methods of maintenance therapy. Dr. Brewer definitely prefers zinc therapy and explains in detail all about it. He offers graphs and lots of information that support his findings. This chapter is perfect for any patient who wants to know how zinc works and how to monitor it throughout his/her lifetime.
Chapter 9 was the chapter that I anticipated the most. It covers the therapy for presymptomatic, pediatric, and pregnant patients. Since my daughter is a pediatric patient and will one day (hopefully) want to have children, I anxiously read through this chapter hopeful that she would have the opportunity to bear children. According to Dr. Brewer there is hope for my daughter. He emphasizes the need to continue anticopper therapy throughout the pregnancy and that with the zinc acetate there is less risk of teratogenic (disruptive to the development)effect on the fetus than penicillamine (which used to be the only choice for patients). This is something that she will definitely have to prayerfully decide. According to Dr. Brewer zinc is the safest of all the drugs. The biggest danger is the mother deciding to halt her medication out of fear of harm to her unborn.... that would definitely be tragic.
In Chapter 10 Dr. Brewer discusses the risk factors during maintenance therapy and the prognosis of Wilson's patients. The biggest risk, believe it or not, is POOR COMPLIANCE! This is especially true in younger patients and/or asymptomatic ones. He says, "It is always shocking to me that compliance is not almost perfect in this disease, given the availability of an effective, oral, non-toxic medication, such as zinc, and given the severity of the alternative." That basically sums it up. However, he goes over some of the things that CAN happen to patients when certain symptoms do not improve and how accidents can be another issue. This is especially true in patients with neuroligical symptoms. For example, a patient with severe depression might commit suicide. That is something that doctors need to be aware of. His final sentence in this chapter is my favorite one: "The bottom line that should be conveyed is thta if you're going to have a genetic disease, this is a good one to have because it is so treatable."
Chapter 11 covers the disease pathogenesis and genetics. Although I HATE what this disease does, I have to admit that the genetics and the disease itself is rather fascinating. I never realized how important copper truly was until I had to read all about it. Why don't doctors test it more often? That is definitely a question to ask. There are still many things we do not know about the genetic defect of the ATP7B gene and how many mutations there are. According to this chapter, over 170 mutations have now been described!! There is an interesting table that shows the mutations in various populations. It is suggested that depending on the mutation that determines the age of onset of the disease and how it manifests itself. Perhaps one day they will be able to find a way to test for that. I am sure it is not too far in the future.
Chapter 12 discusses disease pathology. This chapter answers the question of how excess copper causes damage to cells and organs. This is the chapter that will enlighten you to how important copper is and why too much and not good. This explains why the liver is the primary organ that is affected. The next organ that usually affected is the brain since it is the next most sensitive organ. He discusses the female reproductive system, skeletal system, kidneys, eyes, and heart. It is important to note that Dr. Brewer states: "In the past, the disease was likely more advanced when diagnosed. This probably accounts for many of the pathological and clinical differences reported in the past compared to more modern experience. Today we almost never see the kinds of renal, skeletal, and cardiac abnormalities that were commonly reported two or three decades ago."
The final chapter is one that covers the history and milestones of Wilson's Disease. It is interesting to see how the discovery of the disease came about. It all started with Dr. Wilson who saw several patients with liver disease and then Kayser and Fleischer observed corneal copper deposits in the eyes of another group of patients. All of this happened in the early 1900's. Eventually the copper connection was made and the disease was discovered. It is interesting to note that in 1977 Dr. Brewer observed that zinc therapy in sickle cell anemia produced copper deficiency. This is what led to the idea of using zinc for therapy. It wasn't until 1993 that the genetic cause of Wilson's was discovered. In 1997 zinc therapy was finally approved by the FDA. One thing that was interesting to note was that just because a patient has the harmful mutation of the ATP7B gene, that doesn't mean that the person will reach the full penetrance of the clinical disorder. Therefore it is not ever 100%. Some patients might actually have a milder expression of the gene. Dr. Brewer also mentions that he had two patients who were vegetarians and adequately controlled the disease. He says that the mechanism of this is that copper is less thoroughly absorbed from vegetable foods than from meat. He cautions that he does not recommend a vegetarian diet as a therapeutic approach because it may not work in some patients. His main point is that diet can be a factor in age of onset and other manifestations.
The most important part of the book is the challenges that Dr. Brewer expresses. He basically says that if a doctor doesn't even consider Wilson's in a patient then it won't be diagnosed. If it isn't diagnosed then it won't be treated. If a patient is not treated.... the end is not good. However, the future looks bright. There are already new and better treatment options. The screening methods are improving. I know that there will be advancements in the field of genetics that will help with testing and screening. As we better understand the role of ATP7B in regulating copper then we can better understand how mutation of this gene intereferes with this function. That will ultimately lead to more patients being diagnosed and less ending up with tragic endings.
***********************************
The future definitely looks bright!
***********************************
Sunday, July 19, 2009
The Wilson's Disease "Bible" (Part I)
I accidentally came across a book while doing my research one night. The site I found actually had some excerpts from it and so I was able to read them and was excited about what I had found. The book is entitled: Wilson's Disease: A Clinician's Guide to Recognition, Diagnosis, and Management. The author is George J. Brewer. If you remember, I discovered him recently and found him to be a dedicated doctor who has treated hundreds of WD patients.
My husband recently found it online for a fair price and so we purchased it. Initially I was hesitant because it is a rather expensive book and it IS intended for physicians. However, considering my background in medicine AND my history with doctors and treatment for my daughter, I thought it would be an invaluable investment. This is a book I intend to keep on my bookshelf for a very long time. I just wish ALL doctors did too. It is written so plain and simple and I devoured every word the first chance I got. I read the book from cover to cover in one night. I was so excited about the information and the optimism Dr. Brewer has. He wants doctors AND patients alike to know that a Wilson's diagnosis doesn't mean the end.... it's just the beginning. It is critical that patients receive treatment right away! Asymptomatic patients can't wait for symptoms before doing something. The following information is from the book and I am so excited to share some of what I learned.
The one thing that I was impressed with about the book is the format in which it was written. It doesn't waste your time at all! The first chapter informs doctors about what chapters to read depending on the circumstances of the patient they are inquiring about. It has possible situations and the recommendations. The first chapter basically explains the cause of Wilson's and how it is acquired. It explains the clinical manifestations and ways to recognize it. The last part I was really excited about was the prognosis. Dr. Brewer explains that "it is unfortunate to have a genetic disease, but if you're going to have one, Wilson's is a good one to have, because it is so treatable." Those words have echoed in my mind ever since I read them.
The second chapter explains something that is sooooo critical. He discusses the challenge of recognizing Wilson's. Early recognition is what saves lives. It is the difference between leading a normal life or ending up with serious neurological symptoms or liver failure. Since WD only occurs in approximately 1 in 40,000 births that means that most doctors will not see a diagnosed case in their entire career. The main thing I learned from this chapter is that there are many ways WD can manifest itself. It can be neurological symptoms, hepatic, or behavioral changes. I had heard of the neurological symptoms and liver symptoms, but the behavioral changes was something I had not read much about. Among these symptoms are: difficulties in school or work, temper tantrums, anger, bouts of crying, depression, loss of inhibitions, insomnia, and hallucinations. Dr. Brewer also discusses unusual situations that may present or precede the usual clinical manifestations of WD. I can only imagine all the people who are put on medicines or even institutionalized wrongly! One thing that REALLY impressed in my mind were the various examples he gives of disasters or near disasters caused by patients being misdiagnosed. That part brought me to tears.
Chapter 3 is filled with invaluable information regarding the screening and diagnosis of Wilson's. There are many tests that are underutilized and yet others that give false positives or false negatives. It's so important for doctors to know how to interpret laboratory results they order. They need to understand that some tests are just "screening tools" while others may give more definitive answers. Since WD can present itself in so many ways that means that laboratory tests will also present itself in many different ways for various patients. He discusses the presymptomatic patient as well in this chapter. These are the most difficult to diagnose. It is important for doctors to screen ALL family members who are at high risk once a diagnosis is made.
Chapter 4 was a VERY interesting one for me to read. It talks about the anticopper drugs available to treat Wilson's. He goes over each and every one of them and discusses the pros and cons for each one. He goes over the mechanism of how each works and explains how long it takes for each to work and how they can be monitored. That is something that is critical during the "maintenance" phase of treatment. He carefully discusses how to test the patient to ensure that they are taking their medication. Noncompliance is definitely an issue, especially with asymptomatic patients since they don't realize how sick they can become. If you are not on ANY treatment and you have been diagnosed with Wilson's Disease then PLEASE take my advice and discuss treatment options with your doctor. There are various medicines and treatment options for you!
**********************************
(To be continued.....)
**********************************
My husband recently found it online for a fair price and so we purchased it. Initially I was hesitant because it is a rather expensive book and it IS intended for physicians. However, considering my background in medicine AND my history with doctors and treatment for my daughter, I thought it would be an invaluable investment. This is a book I intend to keep on my bookshelf for a very long time. I just wish ALL doctors did too. It is written so plain and simple and I devoured every word the first chance I got. I read the book from cover to cover in one night. I was so excited about the information and the optimism Dr. Brewer has. He wants doctors AND patients alike to know that a Wilson's diagnosis doesn't mean the end.... it's just the beginning. It is critical that patients receive treatment right away! Asymptomatic patients can't wait for symptoms before doing something. The following information is from the book and I am so excited to share some of what I learned.
The one thing that I was impressed with about the book is the format in which it was written. It doesn't waste your time at all! The first chapter informs doctors about what chapters to read depending on the circumstances of the patient they are inquiring about. It has possible situations and the recommendations. The first chapter basically explains the cause of Wilson's and how it is acquired. It explains the clinical manifestations and ways to recognize it. The last part I was really excited about was the prognosis. Dr. Brewer explains that "it is unfortunate to have a genetic disease, but if you're going to have one, Wilson's is a good one to have, because it is so treatable." Those words have echoed in my mind ever since I read them.
The second chapter explains something that is sooooo critical. He discusses the challenge of recognizing Wilson's. Early recognition is what saves lives. It is the difference between leading a normal life or ending up with serious neurological symptoms or liver failure. Since WD only occurs in approximately 1 in 40,000 births that means that most doctors will not see a diagnosed case in their entire career. The main thing I learned from this chapter is that there are many ways WD can manifest itself. It can be neurological symptoms, hepatic, or behavioral changes. I had heard of the neurological symptoms and liver symptoms, but the behavioral changes was something I had not read much about. Among these symptoms are: difficulties in school or work, temper tantrums, anger, bouts of crying, depression, loss of inhibitions, insomnia, and hallucinations. Dr. Brewer also discusses unusual situations that may present or precede the usual clinical manifestations of WD. I can only imagine all the people who are put on medicines or even institutionalized wrongly! One thing that REALLY impressed in my mind were the various examples he gives of disasters or near disasters caused by patients being misdiagnosed. That part brought me to tears.
Chapter 3 is filled with invaluable information regarding the screening and diagnosis of Wilson's. There are many tests that are underutilized and yet others that give false positives or false negatives. It's so important for doctors to know how to interpret laboratory results they order. They need to understand that some tests are just "screening tools" while others may give more definitive answers. Since WD can present itself in so many ways that means that laboratory tests will also present itself in many different ways for various patients. He discusses the presymptomatic patient as well in this chapter. These are the most difficult to diagnose. It is important for doctors to screen ALL family members who are at high risk once a diagnosis is made.
Chapter 4 was a VERY interesting one for me to read. It talks about the anticopper drugs available to treat Wilson's. He goes over each and every one of them and discusses the pros and cons for each one. He goes over the mechanism of how each works and explains how long it takes for each to work and how they can be monitored. That is something that is critical during the "maintenance" phase of treatment. He carefully discusses how to test the patient to ensure that they are taking their medication. Noncompliance is definitely an issue, especially with asymptomatic patients since they don't realize how sick they can become. If you are not on ANY treatment and you have been diagnosed with Wilson's Disease then PLEASE take my advice and discuss treatment options with your doctor. There are various medicines and treatment options for you!
**********************************
(To be continued.....)
**********************************
Tuesday, July 14, 2009
Beyond Chance (Part II)
We saw a team of doctors who expressed an interest in my daughter's case. I felt good about the whole experience and felt that she was in the best possible hands. How could I not? Well.... to make a long story shorter....she went over a year without any treatment. They repeated her liver enzymes and asked me to collect a 24-hour urine copper. They explained this would be our way of monitoring her progress. Her urine result turned out normal. They warned me that a liver biopsy was inevitable but that they were going to postpone it for now. They told me that they would see her again in six months.
Six months later I took her to her appointment and this time the doctor mentioned that they wanted to start chelation therapy instead of the dreaded liver biopsy. Of course, I was relieved to hear the news and so the information did not "register" until I was on my way home. I started to panic about chelation because I vaguely remembered reading about the horrible side effects. My daughter was asymptomatic and doing so well. Did I REALLY want to make her sick? Did it make sense to start with chelation when there were other options? I decided to do some research.
I went online as soon as I got home and Googled "chelation therapy". I then decided to check out the Mayo Clinic website and read what they had as far as initial therapy was concerned. Everything I read led me to believe that zinc acetate was actually the treatment of choice for my daughter. I also remembered that I had access to the president of Wilson's Disease Association and I decided to email her about my feelings and concerns. This angel of mine immediately emailed me and validated my concerns. She told me that chelation was definitely not the first treatment of choice for asymptomatic pediatric patients. She sent me some information and booklets. I was convinced that I needed to contact the doctor at Children's Hospital and ask him if he had even considered this safer option.
I called the nurse and asked her to make sure that the doctor had considered zinc acetate as a possible treatment. I tried to remain optimistic. I did not want to believe that the doctors would blindly put my child on a very dangerous treatment without looking at the most obvious choice. The next day I received the phone call from the nurse telling me that the doctor had NOT heard of zinc acetate and that he did some research and felt that it WOULD probably be the best route to take. Surprise....surprise....surprise.
What IF I would not have done my research? What IF I wouldn't have questioned the treatment? What IF I wouldn't have contacted the right people? What if? What if? What if? I am totally convinced that things don't happen by chance. There is definitely a much higher power that is responsible for all the blessings in my life. My sweet husband, family, and friends constantly remind me that my kids are so lucky to have me as their mom. I believe that I am the lucky one. I have learned so much from them and my faith in all that's good comes from my motherhood experiences. I don't ever pretend to have all the answers. However, I do have to give myself a big pat on my back for providing these opportunities that have opened so many doors for treatment and ultimately maintenance of my daughter's Wilson's Disease. Who knows what her future COULD have been? That is why I am determined to remain an advocate and to educate everyone I can. PLEASE learn from my mistakes and take whatever tidbits you can from what I have learned and shared. It's beyond chance that you are sitting there reading this right now.... I honestly believe that.
******************************
We are more than mere pawns in
the game of life. We have the
power to be kings and queens.
******************************
Six months later I took her to her appointment and this time the doctor mentioned that they wanted to start chelation therapy instead of the dreaded liver biopsy. Of course, I was relieved to hear the news and so the information did not "register" until I was on my way home. I started to panic about chelation because I vaguely remembered reading about the horrible side effects. My daughter was asymptomatic and doing so well. Did I REALLY want to make her sick? Did it make sense to start with chelation when there were other options? I decided to do some research.
I went online as soon as I got home and Googled "chelation therapy". I then decided to check out the Mayo Clinic website and read what they had as far as initial therapy was concerned. Everything I read led me to believe that zinc acetate was actually the treatment of choice for my daughter. I also remembered that I had access to the president of Wilson's Disease Association and I decided to email her about my feelings and concerns. This angel of mine immediately emailed me and validated my concerns. She told me that chelation was definitely not the first treatment of choice for asymptomatic pediatric patients. She sent me some information and booklets. I was convinced that I needed to contact the doctor at Children's Hospital and ask him if he had even considered this safer option.
I called the nurse and asked her to make sure that the doctor had considered zinc acetate as a possible treatment. I tried to remain optimistic. I did not want to believe that the doctors would blindly put my child on a very dangerous treatment without looking at the most obvious choice. The next day I received the phone call from the nurse telling me that the doctor had NOT heard of zinc acetate and that he did some research and felt that it WOULD probably be the best route to take. Surprise....surprise....surprise.
What IF I would not have done my research? What IF I wouldn't have questioned the treatment? What IF I wouldn't have contacted the right people? What if? What if? What if? I am totally convinced that things don't happen by chance. There is definitely a much higher power that is responsible for all the blessings in my life. My sweet husband, family, and friends constantly remind me that my kids are so lucky to have me as their mom. I believe that I am the lucky one. I have learned so much from them and my faith in all that's good comes from my motherhood experiences. I don't ever pretend to have all the answers. However, I do have to give myself a big pat on my back for providing these opportunities that have opened so many doors for treatment and ultimately maintenance of my daughter's Wilson's Disease. Who knows what her future COULD have been? That is why I am determined to remain an advocate and to educate everyone I can. PLEASE learn from my mistakes and take whatever tidbits you can from what I have learned and shared. It's beyond chance that you are sitting there reading this right now.... I honestly believe that.
******************************
We are more than mere pawns in
the game of life. We have the
power to be kings and queens.
******************************
Monday, July 13, 2009
Beyond Chance (Part I)
I've had some faith-promoting things happen in my lifetime. However, the events that have occurred in the past two years involving my daughter with Wilson's Disease have truly been nothing short of a miracle. I wanted to briefly summarize my journey through symptoms, diagnosis, and treatment so far. I will then discuss a book that should be in EVERY doctor's library. I think this is one of the most important entries I will ever write because Wilson's Disease is rare and my daughter's case is even more rare.
My daughter was a healthy normal child until about the age of two when I noticed symptoms such as her lips, hands, and feet turning purple when she sat in her high chair for long periods of time. She slept more than normal. It was not rare for her to have two naps a day, each consisting of at least 3-4 hours. I tried getting the doctors to pay attention but they ignored these symptoms.
When my daughter was 2 1/2 we decided to evaluate her for speech therapy. She showed a regression in speech. I had some experience with this since my older two sons also had to have speech therapy. During her evaluation the therapist suggested I see a neurologist. She noticed that my daughter was having staring spells. I had never heard of that before and it was shocking to hear those words. However, I listened to this "angel" of mine and before long I had an appointment to see a pediatric neurologist.
The pediatric neurologist we ended up seeing is the one doctor who finally made sense to me. I give him credit for saving my daughter's life. He was not a conventional doctor by any means. He believed in more untraditional medicine and some of his ideas were not respected by other doctors in our area. One of the things he did was do a thorough evaluation of my daughter's blood. He checked many things that are not traditionally tested such as copper, ceruloplasmin, and various other enzymes. He ordered an EEG and CAT scan. He also told me to put her on a special diet of milk-free food for a while and see what happens. He also suggested a liquid multi-vitamin that I purchased at a health food store. There is one other thing he told me that goes against everything I was taught in school. He told me that there was evidence to show that vaccines caused neurological damage in some kids. Could this be causing my child's neurological symptoms? We just will never know.... even to this day.
The labwork was shocking to my doctors. My daughter barely had any copper in her blood. Normal values are 90-180 and she had values that ranged from 7 to 9 after repeat testing. Her ceruloplasmin was also low and almost nonexistent. Her liver enzymes were slightly elevated. When we went for her follow-up the doctor told me that there was a chance she could have Wilson's Disease and we needed to rule it out. That was the first time I had ever heard of that. Of course, that night I googled it and found out everything I wanted to know and a lot I did not want to know.
Her first test was the EEG. The results were inconclusive. The neurologist saw "some abnormal discharges" during the test, but nothing shocking. The CAT scan also came back normal. We took my daughter to an optomologist to check her eyes for the Kayser-Fleischer rings (which are basically distinctive rings of copper that accumulate in the eyes of many Wilson's patients but cannot be seen except by an expert). The optomologist did not see anything wrong with my daughter's eyes. She basically failed all of the "screening tests" for Wilson's Disease at this point. However, the neurologist was not convinced that she was okay. He knew something was wrong and he was determined to find out what. That is what I liked about him. He did not give up. The next thing he did was order the ATP7B gene testing to rule out Wilson's for sure. However, there was a laboratory error and it was never done. He tried a second time with another lab and for some reason it just never got done.
Unfortunately, this doctor moved shortly after this vital step in the process. The next thing that happened is very hard for me to even recall. I felt so hopeless during this time. I felt like the only person who could help my daughter had left me abandoned and all alone. However, I was not going to give up that easily. I searched and searched for another pediatric neurologist. I found out that there was only one left in my city and so I tried her next. She seemed very capable the first time I saw her. I liked the fact she was also a mom and that for some reason reassured me. Little did I know that it would not matter in the long-run. I told her about the previous doctor and what he was trying to do. She told me that he was a "quack" and did not understand why he did all those "crazy" tests on all of his patients. I was shocked to hear her say that. I expressed my concerns about ruling out Wilson's. She was not convinced. She said that my daughter was fine and healthy and that I did not need to do any more testing. However, she hesitantly ordered a 24-hour urine copper. Unfortunately, it came back normal and so she was convinced that my daughter did not have Wilson's.
(This is the main reason I wanted to write this post. I want to urge all of you out there who have a child with ANY copper and/or liver issues to rule out Wilson's Disease. Although it is considered a very rare condition, I am here to tell you that MY daughter has it and it's not rare to me! Listen to your gut and don't give up.)
A year later I decided to take my daughter to the Children's Hospital in Birmingham, Alabama. That is where I was blessed with a Pediatric Neurologist who had previously worked as a Genetic Doctor. I hit the jackpot!! When I told her about my daughter and how I wanted to rule out Wilson's Disease, she only hesitated for a moment and then ordered the very critical test that eventually diagnosed my daughter........ the Wilson's Disease work-up at Mayo Clinic! It consists of the ATP7B genetic test and other specific markers. Her results came back conclusive as diagnostic for WD. Finally, we had a diagnosis!! It took us almost 2 years, but we finally found an answer to why her liver enzymes were elevated and her copper was so low. I was referred to a liver specialist and a GI doctor. The rest of the story will probably not surprise you.
*********************
To be continued......
*********************
My daughter was a healthy normal child until about the age of two when I noticed symptoms such as her lips, hands, and feet turning purple when she sat in her high chair for long periods of time. She slept more than normal. It was not rare for her to have two naps a day, each consisting of at least 3-4 hours. I tried getting the doctors to pay attention but they ignored these symptoms.
When my daughter was 2 1/2 we decided to evaluate her for speech therapy. She showed a regression in speech. I had some experience with this since my older two sons also had to have speech therapy. During her evaluation the therapist suggested I see a neurologist. She noticed that my daughter was having staring spells. I had never heard of that before and it was shocking to hear those words. However, I listened to this "angel" of mine and before long I had an appointment to see a pediatric neurologist.
The pediatric neurologist we ended up seeing is the one doctor who finally made sense to me. I give him credit for saving my daughter's life. He was not a conventional doctor by any means. He believed in more untraditional medicine and some of his ideas were not respected by other doctors in our area. One of the things he did was do a thorough evaluation of my daughter's blood. He checked many things that are not traditionally tested such as copper, ceruloplasmin, and various other enzymes. He ordered an EEG and CAT scan. He also told me to put her on a special diet of milk-free food for a while and see what happens. He also suggested a liquid multi-vitamin that I purchased at a health food store. There is one other thing he told me that goes against everything I was taught in school. He told me that there was evidence to show that vaccines caused neurological damage in some kids. Could this be causing my child's neurological symptoms? We just will never know.... even to this day.
The labwork was shocking to my doctors. My daughter barely had any copper in her blood. Normal values are 90-180 and she had values that ranged from 7 to 9 after repeat testing. Her ceruloplasmin was also low and almost nonexistent. Her liver enzymes were slightly elevated. When we went for her follow-up the doctor told me that there was a chance she could have Wilson's Disease and we needed to rule it out. That was the first time I had ever heard of that. Of course, that night I googled it and found out everything I wanted to know and a lot I did not want to know.
Her first test was the EEG. The results were inconclusive. The neurologist saw "some abnormal discharges" during the test, but nothing shocking. The CAT scan also came back normal. We took my daughter to an optomologist to check her eyes for the Kayser-Fleischer rings (which are basically distinctive rings of copper that accumulate in the eyes of many Wilson's patients but cannot be seen except by an expert). The optomologist did not see anything wrong with my daughter's eyes. She basically failed all of the "screening tests" for Wilson's Disease at this point. However, the neurologist was not convinced that she was okay. He knew something was wrong and he was determined to find out what. That is what I liked about him. He did not give up. The next thing he did was order the ATP7B gene testing to rule out Wilson's for sure. However, there was a laboratory error and it was never done. He tried a second time with another lab and for some reason it just never got done.
Unfortunately, this doctor moved shortly after this vital step in the process. The next thing that happened is very hard for me to even recall. I felt so hopeless during this time. I felt like the only person who could help my daughter had left me abandoned and all alone. However, I was not going to give up that easily. I searched and searched for another pediatric neurologist. I found out that there was only one left in my city and so I tried her next. She seemed very capable the first time I saw her. I liked the fact she was also a mom and that for some reason reassured me. Little did I know that it would not matter in the long-run. I told her about the previous doctor and what he was trying to do. She told me that he was a "quack" and did not understand why he did all those "crazy" tests on all of his patients. I was shocked to hear her say that. I expressed my concerns about ruling out Wilson's. She was not convinced. She said that my daughter was fine and healthy and that I did not need to do any more testing. However, she hesitantly ordered a 24-hour urine copper. Unfortunately, it came back normal and so she was convinced that my daughter did not have Wilson's.
(This is the main reason I wanted to write this post. I want to urge all of you out there who have a child with ANY copper and/or liver issues to rule out Wilson's Disease. Although it is considered a very rare condition, I am here to tell you that MY daughter has it and it's not rare to me! Listen to your gut and don't give up.)
A year later I decided to take my daughter to the Children's Hospital in Birmingham, Alabama. That is where I was blessed with a Pediatric Neurologist who had previously worked as a Genetic Doctor. I hit the jackpot!! When I told her about my daughter and how I wanted to rule out Wilson's Disease, she only hesitated for a moment and then ordered the very critical test that eventually diagnosed my daughter........ the Wilson's Disease work-up at Mayo Clinic! It consists of the ATP7B genetic test and other specific markers. Her results came back conclusive as diagnostic for WD. Finally, we had a diagnosis!! It took us almost 2 years, but we finally found an answer to why her liver enzymes were elevated and her copper was so low. I was referred to a liver specialist and a GI doctor. The rest of the story will probably not surprise you.
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To be continued......
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