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."
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I've recently learned that the insurance
company is not always the guilty ones
when it comes to billing problems.
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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.
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Don't delay....start today!!!!!!!
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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.
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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.
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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!
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M-I-C-K-E-Y.....M-O-U-S-E.......
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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!
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Don't take MY word for it... try it out and
see for yourself.
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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.
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When do we need to worry? Never!
When do we need to take action? Always!
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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.
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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)
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