Zinc Acetate... is it a better alternative?

Recently my daughter's doctor wanted to start chelation therapy for Wilson's Disease. He told me that it was a better alternative to doing a liver biopsy. Of course, when I heard those words I agreed. I left the office still feeling uneasy since my daughter is asymptomatic and they just don't seem to know what to do with her.

I went home and did what I do best.... I googled and researched my heart out. I came across a name of Dr. George J. Brewer. He knows so much about Wilson's Disease that he actually wrote a book! I was able to read some excerpts I found online and it made so much sense! This book is intended for doctors who are GI specialists or liver specialist. He talks about symptoms and things to look out for. He also cautions that Wilson's Disease is often misdiagnosed or not treated properly. He goes over a few different scenarios and how important it is to also test family members of patients with Wilson's.

I went to one of my favorite websites: www.mayoclinic.com (since they are the ones who do the testing for Wilson's Disease) and found some information concerning chelation and different drugs. I also found some information on zinc acetate. According to the information I read, it said that chelation drugs are very dangerous and that if the patient is asymptomatic the doctor will usually begin with zinc. I thought about this and continued my research. I contacted someone from the Wilson's Disease Organization and they confirmed that the chelation drugs are very nasty and have some serious side effects. I knew that since the doctors had told me that to begin with. I still didn't want to make any haste decisions... so I decided to call the nurse and tell her my concerns and ask her if the doctor had considered zinc acetate as a possible treatment? I told her that I was confident that he had, but I would feel better hearing it from her.

I just got a phone call from the nurse and she said that the doctor did some research on the zinc acetate since he didn't know much about it and found that it would probably be the best route to take right now. He felt better about going that route versus chelation. I am once again disillusioned with the whole situation. I thought he would be on top of things, but it seems like I am the one doing the legwork. They are the ones getting paid the big bucks. I thought they would take a special interest in her since she's such an "enigma" .... to put it in their own words.

My husband purchased a book entitled: "Wilson's Disease: A Clinician's Guide to Recognition, Diagnosis, and Management" written by George J. Brewer. Dr. Brewer has seen over 300 patients with Wilson's Disease, including many younger patients with no symptoms. I would love to talk to him, but this is going to be the next best thing. The book should be arriving soon and I am going to read it from cover to cover! The more informed I am, the better I will feel. It is obvious to me that I have been an integral part in my daughter's success so far and I intend to do all I can to ensure that she stays healthy. I am not going to wait until she has liver failure or hepatitis to be proactive. I am not going to let this "disease" get the best of my daughter.... not by a long shot!
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I am not going to sit back and let
this disease take charge.
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Angels and Demons

Right now I am reading a book entitled "Angels and Demons" and it's written by the same author as The DaVinci Code, which I thoroughly enjoyed. In the book they mention how in the old days they would kill people who called themselves "scientists" and taught things that contradicted principles taught in church. These people were considered crazy. Just imagine for a second a world in which we still believed the world was flat, or one in which the sun was NOT the center of the universe, or perhaps that illnesses were a direct result of God's wrath. Those are things that used to be the "norm" in thinking. Of course, NOW we know all that is not true.

Reading the book made me think about all the changes and modern-day miracles that have been discovered and/or invented. It also made me feel sad about some of the changes that we are experiencing that aren't so good. There are so many things that are going through my mind right now. The first thing is the rise in mental illness in children. The other thing is the changing of medicine. Lastly, is the breaking down of the family unit as we know it today. I will first talk about the rise in mental illnesses in children. Why is it on the rise? That is definitely a good question we need to ask. All you have to do is turn on the t.v. and you will be bombarded by commercials for medications to treat depression, ADD/ADHD, anxiety, etc....the list is endless. It seems like every year we hear more and more of mental illness with children and that kind of scares me. What is going on? What's different about today that is making it harder for parents and kids? The obvious things to me are entertainment, food, and amount of exercise. The other things I thought about were morals taught at home, stable home environment, time spent with family and friends, school, and perhaps the music we listen to. All those things contribute to the type of person we become. It also can explain why there are so many problems with children today. Can that alone explain the rise? I don't think so. There are definitely environmental factors at play.

How is medicine changing? Well... instead of learning to cope with problems we are encouraged by the medical community to pop a pill instead. Instead of learning what the root of our symptoms are, we are given medicine. Instead of preventing illness we are sometimes causing it by the way we live. All these things are so frustrating to me. It seems logical to me that they should teach about alternative medicine in medical school, but they clearly don't. It's considered "quackery" and basically dismissed by doctors. I think if something works, then why not learn more about it? If I was a doctor and my patients were telling me that something was working for them I would totally encourage it and possibly suggest it to future patients as an alternative. However, it's been my experience that there are a lot of narrow-minded individuals in the medical community. As long as the pharmaceutical companies continue to brainwash the doctors and "buy" them with extravagant gifts this is not going to change anytime soon.

The last thing and most important change I have noticed is the breakdown of the family unit. Not only are people waiting longer to have kids, but it seems like a lot of parents don't take parenting very seriously. It's rare to see a family sitting together having a meal these days. That is so sad. I know a lot of mothers who choose to work just to maintain a lavish lifestyle. I think a child would much rather have a mother's time than the latest styles of clothing or electronic game that just came out. This year I am a Room Parent for my daughter's kindergarten class and it's so sad to see how many parents don't take their child's education seriously. It's almost like they expect others to raise their children and educate them as well. The schools are not a substitute for what should be taught in the home. As a matter of fact, I have learned the hard way that I have to work much harder these days to undo what they ARE taught in schools sometimes..... it's not always good.

Sometimes I feel like a pioneer in my own right as it pertains to the medical care of members of my family. There are a few people in my life that totally agree with my thought process and provide more insight. There are others that totally disagree and feel I am insane. At times I feel a bit like the scientists of old who tried to prove their theories and ideas but found a great deal of resistance. In my heart I am a scientist. Although I don't work full-time in a laboratory anymore, I still have it in my blood. I have a innate curiosity about how things work. My laboratory has morphed into my home office and the computer. It includes books, sessions with doctors, and the laboratory results I have organized into files. I also have witnesses and testimony of other parents. It has been a very positive experience for me. It will be my life-long journey and although I don't get a paycheck, I do get a much greater reward..... seeing my children happy, healthy, and strong.
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Sometimes truth is stranger
than fiction.
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Vaccines of the Future

I was reading my March issue of Reader's Digest today and saw a very interesting article about vaccines. The article was entitled "Vaccines without needles" and it definitely got my attention. It basically said that the patch was not just for smokers or cruise-ship newbies anymore. "Intercell USA and Ideo have developed a method of transcutaneous immunization. It's in advanced FDA trials and will target diarrhea, then the flu."

Of course, if you have been following my blog you will know that I can't read something like that and let it go. I Googled it and found a lot of information. I am more than happy to share with all of you what I found. The first thing you have to understand is that the patch has its flaws. I know from experience that it doesn't always work. I have known a friend or two who were on the birth control patch and ended up pregnant. However, I have also known people who take heart medicine via patch and have done it successfully for years. I guess it all depends on how it's administered and how long the patch needs to remain on the skin for the vaccine to work. Also, the efficacy of the patch in relation to vaccines will have to be carefully assessed or else we will have a much bigger problem than the shots.

According to what I have read in the medical journals concerning the patch for vaccines, it seems that the results are very promising. They have actually tested them on people and the process seems very simple. The following is a good link:
http://www.ideo.com/work/featured/intercell
It actually shows the process through a slide show and it's amazing! I recommend you check it out. The part about it that fascinates me the most is that you in theory could vaccinate yourself! There was an article in Business Week that had some good applications for this type of vaccine. "Iomai executives believe that the patch's user-friendly design will catch the attention of the U.S. government, which has been looking for products that can be stockpiled and distributed during a much-feared outbreak of pandemic flu. With needles out of the picture, Iomai's product could allow patients to vaccinate themselves—eliminating the worry of overcrowded emergency rooms and overwhelmed physicians." That is something I had not thought about.

The way this vaccine works is that it penetrates through the "dead layer" of skin cells and makes it way to the Langerhans cells. This causes an immune response and then you are protected. It definitely sounds "too good to be true" but I am hopeful. Because of the way it's designed I would imagine that it would be harder for contamination to take place, and since it's manufactured in "single doses" that would mean that it would require less preservatives. Of course, I know very little about this vaccine so I am just giving my opinion. I will definitely keep my eyes and ears open and let you know if I find out anything new about it. I am definitely excited about the future!
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The future is limited only by
our imagination.
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Medical Insurance Roller Coaster

Here we go again.... it looks like they decided to cover our laboratory testing for now. We never received the itemized bill for our family. I am sure there is a good reason for that. However, the statements they sent don't have duplicate charges on them... very interesting, huh? Maybe it was the not-so-sweet letter my dear attorney husband sent them? Maybe it was my 50+ phone calls to their office? Or maybe it was the fact that they FINALLY received the information from the hospital that they have been requesting since April of last year? Who knows?

Instead of the thousands of dollars they claimed we owed, we started receiving bills for $35.00. There are a couple of $540.00 bills that we are waiting on, but at least we aren't in collections anymore. That was my biggest complaint about the whole process. It seems that they can send someone to collections even though it's the insurance's fault and ruin your credit. I can understand if I NEVER called them or ignored the bills. However, I was totally the opposite. I called them numerous times and let them know what was going on. They assured me that everything would be okay. Here we are almost a year later and the hospital has not been paid.

If I knew then what I know now would I get the testing done? Absolutely yes!!!! It was more than a diagnostic test. It was our peace of mind knowing that our family was safe, and we did not have to worry about Wilson's Disease with any other member of our family. Wilson's Disease is totally treatable if it is caught early enough. If left untreated, it is fatal! Nobody can understand the feeling you go through when you find out that your child has a potentially fatal disease and that the insurance company could care less about it. I repeatedly reminded them that if we did not catch this now, we would have been faced with hundreds of thousands of dollars because she would have needed a liver transplant.

I am thankful for the Lord's mercy and guidance through this process. There were times when I wanted to give up. However, every time I looked into my daughter's beautiful blue eyes I would be reminded of what was at stake. Even when the doctors tried to convince me that she was okay I persisted. Even when one pediatric neurologist told me that I was misled by a "quack doctor" I did not listen. I no longer wonder what helped me through this. I know without a shadow of a doubt that my loving Heavenly Father had a hand in the diagnosis and the health of my child. Medicine and religion CAN coincide. I know this to be true. I also know that there are some awesome Christian doctors out there who are guided by the spirit. I am blessed to have found such doctors.
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My belief is that God had a hand
in the development of medicine.
Our health is a blessing and we
should treasure each day we have
on earth.
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Speech Evaluation Update

I took my #4 to get evaluated at the Speech and Hearing Clinic at a local university today. I was so excited to see his teacher and the director of his preschool there. They had some really good input and insight into his progress and things they have observed. I think because of them, he got a very thorough evaluation. You know... I keep saying this, but I feel like I am surrounded by angels. I kind of questioned my timing and worried that perhaps I had waited too long to get him evaluated, but today proved to me that I did the right thing.

The appointment was at 8:30 am and so my morning was pretty hectic trying to get all the kids ready for school and then hurrying to the clinic to make it to my appointment on time. I was told to be there a few minutes early and so that made it even more challenging since my other three kids have to be at school by 8:00 am. I had to time things just right. My sweet husband and I worked together and he took the other three to school while I went to the appointment. I arrived early and was able to relax while we waited for them to call us in. As soon as the teacher and director arrived we were called in for the meeting. The lady in charge remembered me from my previous visits and she was very warm and accommodating. We had a lot of paperwork to sign and a few things to discuss. Afterward, everyone was excused and my #4 and I stayed for the testing. I was so excited to be present for the testing because I wanted to see first-hand how they did it and how my child did.

The testing was very interesting. Since many of you may never get the opportunity, I thought I would give you some of the highlights. She used a box of toys to do some of the testing. For example, she had a teddy bear and she asked my child to feed the bear and handed him a bowl with a spoon. He did very well. She told him that the bear was thirsty and waited. He kind of looked at her and then took the cup and pretended to give the bear some water. That part of the testing was fun for my child. I have to admit that it was fun for me as well to watch him do so well. He sat there and participated like a little man. I was so proud.

The next part of the testing consisted of having to look at pictures and scenes. She had a flip chart-type book with pictures and she asked different questions about the pictures. For example, there was a page with a bunch of teddy bears and she asked him to point to the red bear, the green bear, etc... There was another page where there were pictures of kids doing different things and she asked him to point to the kid who got hurt, for example. He did very well responding to her questions. However, when she asked questions about gender he did not do very well. He also had difficulty going from one task to another without getting distracted. (I thought that was normal for his age, but they seemed to think it wasn't.)

The last part of the testing consisted of auditory questioning. In other words, my child would have to listen to what was said in order to answer the question correctly. He did not do well on this part of the exam. He would only hear the last part of the question or else would repeat what she said. That is when I noticed a bit of deficiency. I was pleased at his articulation. For the most part, he was understood.

The results were mostly positive. The evaluator said that she saw not problems with articulation. She understood him perfectly. However, she did see deficiencies in language and when she totalled the results he got a score of 62 with average being 100. That basically qualified him for services through the Public School system. They will have a lady come once a week to his preschool and work with him for thirty minutes. That is basically what they did with my daughter and it worked for her. I am confident that since he is definitely more advanced than she was that he will do very well. His paperwork will show that he is "Language Delayed" and they will do further testing in about a year just to make sure that his therapy is working.

I know that if I would have done his testing earlier then he would not have qualified because the cut-off for qualifying is about 70 or 72 on the 100 scale and it would have been more difficult for me to get services. It also helped me to have the director and teacher who have known him for years there. They had a lot of input and answered questions that I could not answer. For example, they wanted to know if he could sit and listen during instruction or "circle time" and they were able to explain that he could. That was something I had not been able to observe. One of the questions that was asked was actually one of the more critical ones... the evaluator asked, "What would help YOU the most?" The teacher answered, "If he could answer my questions and let me know what he wants that would be great." That is going to be our ultimate goal.

Speech Therapy services cost a lot of money and many parents cannot afford it. That is why every parent needs to find out what services are available to them through their Public School System or even their state. Every state is different and every school system differs. However, the key is to get your child tested as soon as you see a delay. You don't want to wait until the child begins school. By then it might be too late. Early intervention is key. These people are trained professionals and they can help your child reach his potential. Don't let it be discouraging. Although it's less than ideal to have a child with a language delay, it doesn't mean that he's not smart or that he won't have a wonderful future ahead of him. As a matter of fact, I know that because of the extra help I will be receiving, my child will excel and possibly surpass all of my expectations. What helped me decide to get my child tested was the Milestone Questionnaire that the school offered the parents. It wasn't until his 36 month checklist that I began to see some delays. If you don't have access to that, there are many resources online. Many pediatricians also offer help with that as well. You don't have to do it alone.
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The only dumb questions are those
not asked.
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Alas.... It Was Too Good to Be True

Something told me to call the hospital laboratory and confirm that the balance for me, my husband, and my older son were what I was told the other day. Ironically, I've had laryngitis now for about 4 days and for a couple hours I was able to talk. I decided to take advantage of that and call them since it was on my "to do list" and I wanted to make sure it was done. Little did I know I would be opening up a can of worms.

It seems to me that our ONE laboratory test has become about 16 procedures and 3 different accounts PER PERSON! That is why I keep getting different stories when I call. Luckily, I ended up with a lady who seemed to know what she was doing. In stead of looking at just one account, she pulled all of them up on her screen and was able to give me the specific numbers and balance information. Unfortunately, it looks like we still owe thousands and thousands of dollars. We are basically back at square one. Lucky me!!

We requested an itemized bill and should be getting that very soon. Once we look at that and see what our insurance has already paid and what is left then we will have a better picture of what is going on. Also, we will hopefully be able to catch any double billing. I have a strong suspicion that we were double billed.... especially since my husband and oldest son have the same name and birthday. That is a very likely error.

I still haven't lost hope. I know that things will get straightened out and that we will be able to clear all of it up. I am trying to keep in mind that there is no sense in stressing over things we cannot control, but rather doing what I can on my end and leaving the rest up to my Heavenly Father. It's in His hands now.
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The Serenity Prayer.... keep
that in mind.
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The Insurance Dilemma Continues

My heart goes out to anyone who has had to battle any medical insurance company. I never dreamed that I would be faced with that battle. It's unreal the lengths that these people will go to in order to not have to pay. The irony of it all is that the testing we had done that they don't want to cover had the potential of saving them millions in the long-run.

We FINALLY got myself, my husband, and my daughter's testing covered. We're almost done with my oldest as well. However, there are still two more that they refuse to pay on the basis that they deem the testing, "not medically necessary" or "does not meet criteria for coverage".... it's crazy! All of us (except for my daughter) went and had the blood work drawn on the same day and had the same test done on the blood. For some reason they just want to pick and choose who and what part of the testing will be covered. It doesn't make sense.

I have spent so many hours on the phone on hold and talking to people that my ears are ringing. I have talked to my insurance company and the hospital. I have received many versions of their story and it's never the same. Of course, the latest "story" is that my hospital has not given my insurance company enough information and then the hospital is saying that they are denying it in spite of the information. The last time I spoke with them I was told that they cannot call one another to straighten this out. That was the last straw for me! MY last words to the hospital were, "if that's the case, you leave me no other choice." I hung up and called my dear husband who (as many of you know) is a lawyer. :)

I know that with a lawyer's letterhead it will be taken more seriously. So far I have been very sweet and patient on the phone. Perhaps now they will realize that we mean business. We are going to make our demands known and if they don't do what they are supposed to do then they will be in essence not fulfilling their end of the contract. We pay on time, never late... and we haven't needed much coverage since we are all very healthy. Now that it's time for the insurance to do their part, they have the obligation to do so. It's not our fault if things are messed up with the paperwork. That is THEIR job to straighten out, not mine.

Four out of six isn't bad, huh? I am proud of myself for not giving up. I want all of you to know that there is hope with insurance companies. The main thing to remember is to call them as soon as you realize there is a problem. NEVER assume that the hospital, doctor's office, or ESPECIALLY the insurance company will take care of things. It's up to you. I know that's unfair, but it's true. Sometimes it's just a clerical error and that can be resolved fairly easily. Make sure to keep all your "Claim Reports" and especially your bills. I will let you all know when I am six for six! Hopefully that will happen very soon. Wish me luck!!
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Insurance companies know that
all you can get them for is
"breach of contract" when they
refuse to pay. Most people
do not have a lawyer to help
them. That's just wrong!!
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