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.
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The future definitely looks bright!
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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!
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(To be continued.....)
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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.
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We are more than mere pawns in
the game of life. We have the
power to be kings and queens.
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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.
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To be continued......
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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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Wilson's Disease Diet That Works

I thought it was time to talk about Wilson's again. Since it seems like things are going well for our daughter I thought I would share what we are doing and save some of you the hassle of months and months of research. I am definitely willing to share what I have found. :)

The first thing you need to do is educate yourself on what foods are high in copper. Since I have a medical background I can understand some things that perhaps others can't as far as units of measurement, metabolic pathways, and other things I sometimes take for granted. However, I have found numerous sites that offer tables, charts, and other important information that can be very useful in making it all make sense. The important thing to remember is that sometimes it's not the food that contains the copper, but the way it is processed that makes it dangerous. We were fortunate to get a diagnosis so early and so my daughter has made a smooth transition. She treats anything with chocolate, mushrooms, dried fruit, etc... like poison.

I want to refer you to the mayo clinic website. That is the first site I visited and it has a lot of information concerning Wilson's Disease. This is the link:
http://www.mayoclinic.com/health/wilsons-disease/DS00411

Another website that is fabulous:
http://www.gicare.com/Diets/Copper-Restriction.aspx

yet another:
http://www.wilsonsdisease.org/copper.html

I could go on, but I think you get the idea. There are tons of websites out there and they all have valuable information. All you have to do is google "Wilson's Disease" or "Low Copper Diet" and you will find many more.

One thing I am going to do is meet with a nutritionist soon. I will update you all on what I find out. I think that it's important to make sure that my daughter has a well-balanced diet not lacking in essential nutrients and vitamins.

This is the diet we are currently following: we avoid certain foods such as chocolate, leafy green vegetables such as spinach, mushrooms, nuts except peanuts, beans, shellfish, organ meats or anything that might contain it such as cheap hotdogs, Ovaltene, instant breakfast or "meal-replacement" drinks, whole wheat products, and we refer to charts often if we are unsure.

The good and bad about this condition is that since there isn't an "allergic" reaction to these foods it is easy for the parent AND child to forget or "break the rules" once in a while. I have to admit that on special occasions I sometimes will let her have a bite of chocolate or have a chocolate chip cookie. I don't want her to rebel and go overboard in the future. The main reason I have been so strict in following the diet is because I know how addictive certain foods can be. It's easier for her if she learns now to retrain her palate. I can't even imagine if I had to avoid chocolate. It's one of my favorite things in life and it's a drug of sorts for PMS and other conditions. However, I have learned some substitutions such as carob for her. She loves carob malt balls. They are a little treat we get for her when she is craving chocolate.

Right now my daughter is not on any medicine. I know that zinc seems to work for some people who have trouble controlling the copper absorption. That is something to definitely check into. Another thing that is worth checking is the copper level in the tap water. They don't recommend consuming more than 100 mcg/L of copper. You can either look at the water report or call your water company and get your water tested. We are lucky in our area to have good water with low copper levels. However, we don't take chances and we use only filtered water for drinking. It's yet another precaution that doesn't require too much effort and it's worth the time.

I will try and remember to update you all on the nutritionist information. I am eager to find out if we are lacking in any vitamins or nutrients for our daughter. She is doing great and is growing up so tall. I am optimistic that she will continue to be healthy. Her liver enzymes are improving and I like the fact that for now we are not having to take any drugs for her condition. I am so thankful for the prayers and best wishes on her behalf. They are definitely being heard. I am also thankful for the inspiration and dedication of the doctors we have today.
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Wilson's Disease is not curable,
but it is definitely treatable.
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Omnibus Hearing Update

I know many of you have been wondering what is happening with the Omnibus Autism Hearing and if they have made any rulings. They don't like to make things public and so we have basically had to look online to get current information. They only send information pertinent to our case by mail and the last thing we got was a notification that if we want to proceed with our case we need to let them know.

Recently, my husband received an email from a friend about the latest ruling. Evidently they ruled against the first theory of causation saying that there wasn't enough evidence. The first theory had to do with the MMR vaccine causing autism. This is the article my husband forwarded to me:

Officials say 'bad science' links vaccines, autism
Friday, February 13, 2009 4:40 AM EST
The Associated Press
By KEVIN FREKING and LAURAN NEERGAARD Associated Press Writers


WASHINGTON (AP) — Bitter feuding over a possible link between vaccines and autism won't go away despite a strong rejection of that theory by a special federal court.

Thousands of families were hoping to win compensation and vindication through three test cases presented to the court. They contended that a combination of the measles-mumps-rubella vaccine plus other shots triggered autism.

Officials with the U.S. Court of Claims said they sympathized with the families, but there was little if any evidence to support claims of a vaccine-autism link.

The evidence "is weak, contradictory and unpersuasive," concluded Special Master Denise Vowell. "Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.

Attorneys for the families said an appeal is a distinct possibility. They also noted that the court still must rule on another theory that vaccines once carrying a mercury-containing preservative are to blame.

The head of a consumer group that questions vaccine safety said she still felt there were the possibility of a link.

"I think it is a mistake to conclude that because these few test cases were denied compensation, that it's been decided vaccines don't play any role in regressive autism," said Barbara Loe Fisher, president of the National Vaccine Information Center.

Science years ago concluded there's no connection, but Thursday's rulings in a trio of cases still have far-reaching implications. The move offers reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise, and last fall a Minnesota baby who hadn't been vaccinated against meningitis died of that disease.

"We need ongoing research into the causes of autism but cannot let unfounded myths keep us from giving our children the proven protection they need against infectious diseases," said Dr. Joseph Heyman, chairman of the American Medical Association.

More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program. Thursday's rulings dealt with the first three test cases to settle which if any claims had merit — and unlike in civil court, the U.S. Court of Claims doesn't require the families to prove the inoculations definitely played a role, just that they probably did.

"I must decide this case not on sentiment but by analyzing the evidence," said Special Master George Hastings Jr., writing specifically about Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.

"Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment," Hastings concluded.

Lawyers for the families said they were disappointed.

"There was certainly no scientific proof that vaccines caused autism, but that's not the standard; the standard is likelihood," said Kevin Conway of Boston, who represented the Cedillos. "We thought our evidence was solid."

Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a tenfold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.
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Okay... first of all, how can they say that the rest of the 5,000+ families are going to have the same evidence as these three "test cases"? That is ridiculous! What about the Poling Family? They had a ruling in their favor. What if they were one of the 5,000+ families? Would it be fair for them not to be heard? It makes absolutely no sense whatsoever for them to group all the cases into one big lump. It would be the same as saying, "Oh...let's look at three test cases out of 5,500 for reactions to this new drug." I can't believe my eyes. I really can't.

The other factor that I cannot overlook is the fact that in the U.S. Court of Claims, people don't have to prove that the vaccines absolutely caused autism, but that they "probably" did. I don't have to imagine how these families feel because I am one of those families and I feel like I got hit by a huge semi-truck. Our theory of causation has not been ruled on yet, but I can only imagine how it will go. You can't deny all these cases. If you have a perfectly normal, healthy, and vivacious child and you introduce something into their bloodstream and all of a sudden they start to have seizures, lose their ability to communicate, and in some cases go into a "zombie-like" state... then you can't tell me that there is not a correlation of some sort. The best evidence to me is the recovery of some of these individuals. I wish they would focus on that. My child has recovered almost fully and my doctor tried to deny it. If my child was born with something then I would accept it, deal with it, and move on. However, she was born a healthy and normal child.

The last point I want to make is that I am not sure if there will EVER be 100% proof that vaccines cause neurological problems in some kids because there are too many factors involved in the process of proving your case AND too much money available to disprove the theory. Vaccines are a billion dollar industry and encompasses the entire world, not just the United States. I am not sure what the answer is at this point. The numbers of children with neurological problems and developmental delays are rising faster than we can keep up with. If we don't figure out what is happening to our kids then we will end up with future adults who have social deficiencies, lack self-control, are underachievers, can't cope with change, and who have to depend on all of US to support them.
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Parents just want to know that the vaccine
manufacturers are listening.... and more
importantly, that they care.
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Wilson's Disease and the Biopsy Dilemma

I took my daughter to see her specialists at Children's Hospital in Birmingham, Alabama. It was a nice road trip and a chance for us to have a "girl's day" together. I tried to make the best of the experience and I hope I succeeded. We had a couple hours to do whatever we wanted before the appointment and so we ate at a Waffle House and then visited the gift shop at the hospital. They had a lot of cute things. I bought her a Hello Kitty ring with lip gloss inside of it. She loved that!

We signed in early, but it still was a long wait for us. We waited for about an hour. I thought it was a bit ridiculous! When the doctors finally came to the room, they still seemed baffled about everything. They explained that everyone they talked to and consulted with did not know exactly what course of treatment, if any, we should take. Since the liver enzymes were elevated last time, they were concerned. They basically said that at this point it was a matter of WHEN and not IF she was going to need a liver biopsy. To make things worse, they told me that when you do a biopsy on a child they have to keep her overnight for observation because of the risks including bleeding. I didn't like the news. It seemed a bit risky, especially when she seemed so healthy. They further explained that if her liver enzymes continued to rise then they needed to find out if there was copper accumulating in her liver before she showed signs of jaundice and other liver damage symptoms. At this point, we were going to do her bloodwork and if her liver enzymes did not change then we would continue to see them every six months and recheck her urine and liver enzymes.

I have to admit that I felt a bit lonely after hearing the news. I am not sure if I can explain it in words, but I will try. Before, I could sense a bit of urgency in trying to find information and figuring out what to do with Sarah from the doctors. This time it was different. It was as if they had forgotten about her, we showed up, and then they quickly reviewed the chart, and gave me the same "story" that they gave me before. The exception was that this time they threw me a "curve ball" with the biopsy suggestion.

After we met with the two doctors (which was approximately five minutes each ... possibly less)we went to the lab and got her blood work drawn. I have to tell you about the lidocaine cream (you can request the prescription from your pediatrician and get it at your local pharmacy). It's a miracle cream for us. Before I found it, my daughter would be so anxious about getting her blood drawn that I would have to hold her on my lap and press down on her legs to keep her still. It was an ordeal. NOW... we go and she's happy and tells everyone that it's only going to hurt a little bit. Today she actually told me that it didn't hurt at all. I was glad. It's very easy to apply. You put a thin layer over the crease of her arm (where they will draw the blood) and then cover it completely with an occlusive dressing to keep from evaporating before taking affect. It takes approximately 15-20 minutes, so you need to time it accordingly.

On the drive home, my daughter fell asleep and so I was left alone in my thoughts. Of course, all I could think about was her laboratory results. They would determine whether she would need a biopsy or not. It was torture not knowing. All of a sudden my cellphone rang and it was the doctor's office. The nurse said that the results had come in and that she had some good news. Her liver enzymes had improved!! I was excited and overjoyed! It was better than Christmas. I thanked them for calling and the rest of the ride was wonderful.

Keeping my sweet daughter healthy is my utmost goal. I will go to the ends of the world in search of treatment and answers. Luckily, whatever we are doing is working, and it seems my answers have been just a prayer away.
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Although doing nothing seems the
easy thing to do... having no
answers is definitely harder.
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My New Favorite Doctor

As you all know, I have been struggling for quite some time with my current pediatrician. He seems to be in a power struggle with me and I just don't trust him anymore. It's sad because I have been using him for 12 years now and it's a shame. I've stuck with him all this time because of a feeling of loyalty... I know... it's crazy, but true. I have decided that it's time to move on and join another group. They are more in tune with my feelings and we seem to be on the same wavelength when it comes to our philosophies concerning medicine. For example, they wait until babies are two months before beginning vaccination. Also, they are TOTALLY supportive of a "safer schedule" and that means a lot to me.

I have to give you all the details of my first visit with my new doctor... my new friend. I scheduled an appointment for my baby's 3 year old check-up for today. My appointment was at 8:30am and so my wait was very minimal. I didn't look at my watch, but I would estimate that I waited approximately 10 minutes. That gave me enough time to fill out all the paperwork and give them my baby's records. The first person I talked to after the receptionist was a nurse and she was very sweet. She gave me a cup and said, "Try to get him to pee in the cup, but if he doesn't that's okay." I went into the bathroom and he refused to "pee" in the cup. I came out and shook my head. She smiled and took the empty cup. Then they took his blood from the finger and he did great! He didn't even cry. After that, they weighed him and then directed us to the examination room. The nurse measured his length and then began a battery of questions that really impressed me! She asked me behavior questions, milestone questions, about his eating habits, and other things that I wasn't accustomed to. It was very thorough. She left and we waited for approximately three minutes before the doctor came in the room. He was a young-looking doctor with a pleasant face and smile. He had a calm demeanor and it rubbed off on Charles because he immediately calmed down. Normally my baby would freak out when the previous doctor tried to check his heart or ears and he didn't react that way at all with this doctor. It was amazing!

This doctor is a Christian and very open about his beliefs. He quoted a few bible verses within the first five minutes of our visit. He mentioned how according to the charts, my baby could possibly grow to about 6 feet 4 inches tall, but ultimately it's up to God how tall Charles was going to be. He also let me know that he was perfectly normal and that I should not get caught up on what others feel is "normal" because each child develops at a different rate. However, it wouldn't hurt to get him evaluated for speech if I had any concerns. He reassured me about his eating habits. His growth was off the curve at greater than 95th percentile and his weight was a little above middle range at 80th percentile. He went over his blood work and that was nice. It all looked perfect!

Of course, you all are wondering what about the vaccines? Well... I wanted to save the best for last. He asked me if my baby was up to date on his shots. I told him that we were following a different schedule. He looked at the shots that he had received and acted like he was pleased. He said that the only shots he was due for was the polio booster and the MMR and Varicella. I told him I only wanted to do the booster and he smiled and said, "good... Yeah, the preschools and schools push for that...You want to wait a while before giving the MMR and Varicella, right?" I nodded in agreement. He smiled again and said, "Will the school be okay with that? Or will they give you problems?" I told him, "Oh...they're okay with that." He replied, "That's great!" I asked him about the blue slip and if I could get an updated one and he said, "sure...no problem." (This made me sad because that's when I realized that my current pediatrician was being really rude with me. He was denying me a basic thing in order to force me to do what he wanted. Very evil!!)
He then wrote some notes on a slip of paper and handed it to me. On it was written, "Next appt. at 4 yrs." That meant that he wasn't expecting me to come in earlier to get shots and that wasn't even an issue for him. I was so excited I immediately called my dear friend who recommended them to me to tell her all about my experience. If you are reading this.... you know who you are.... THANK YOU... a million thanks!!!

It's not a coincidence that things happened the way they did. I could say to myself that it would have been better to have discovered this group earlier and who knows? However, I know that things happened for a reason. I now appreciate this doctor so much more. I am also armed with more knowledge and conviction about my beliefs. I am definitely a different person today than I was just a couple years ago. I truly believe that this is definitely the start of a beautiful friendship.
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"Louis, I think this is the beginning
of a beautiful friendship"-Casa Blanca
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Wilson's Disease Monitoring and Insurance Company Battles

I haven't written about my daughter in a long time and I thought I would update you all on her condition and how we are trying to stay on top of things.

Wilson's Disease, as many of you already know, is usually not diagnosed until the person is sick or has some acute liver problem. My daughter is an enigma of sorts and so doctors really don't know how to treat her. The biggest thing right now is that we are monitoring her and making sure to keep a close eye on her copper excretion. The way we do this is by doing 24-hour urine copper testing. Basically, they give you this huge jug and you have to collect ALL the urine that comes out of her body in a 24 hour period and place it inside the jug and keep it either on ice or in the fridge. The biggest challenge for us is catching her before she pees in the toilet. It's so easy to do. She's only five and when she has to go... she has to go. One thing I figured out to do was to place a potty-training seat on top of the toilet. That way if she forgets then it will remind her. We got the kind that just snaps on top of the regular toilet seat and has like a cup. I just pull the cup out and pour the urine into the jug. It's the perfect solution. (I recommend this to anyone who has to collect urine for a girl.... much easier than the little cup they give you.)

Her next appointment at the Children's Hospital is in January. They will take her blood and do the liver enzyme testing. That is so scary for me. I have to admit that at times I forget that she has Wilson's. It's not until I have to see those liver enzyme tests that it reminds me. Her liver enzymes were elevated last time they did them. They didn't make an issue of it when we last saw them, so I didn't think to look at them thoroughly. However, upon closer inspection I realized that some of the enzymes were double what they are supposed to be. Being a Medical Technologist is a double edged sword. It gives me the laboratory knowledge to understand the results of the testing.... However, it also means that I am aware of what those results mean. You know what they say... ignorance is bliss. Sometimes I wish I didn't know so much.

My battle with the insurance company has finally been resolved with my daughter. I am still working on the rest of the family though. The genetic testing cost approximately $2700.00 per person. Needless to say, the insurance company did not make it easy for us. First, they claimed it wasn't medically necessary. I was soooo upset about that! They asked for medical records and a statement from the doctor stating why the test was ordered. I was worried about future tests, so I asked her doctor to make sure she explained in no uncertain terms how necessary this testing was. She wrote the best letter for us and I hope that it covers any future testing we might have to do.

The next issue we had to deal with was the billing. They processed it all wrong and I had to straighten it out. They were submitting it and resubmitting it, and it began to look like they were trying to bill us twice for the same testing. Of course, the insurance company questioned it and had to go through the entire process again. In other words, we were fine and covered and then all of a sudden it was rejected again. UGH!! What a nightmare!

Right now I am waiting to hear from the hospital about the rest of our family. According to the insurance people they paid already and had other payments sent in early December, and we only owed a couple hundred dollars total. However, the hospital explained to me that they had not received any payments since October. Who is telling the truth? Who knows? I would bet on the hospital because they definitely want to get their money and the insurance company will do whatever they can to NOT pay for services. I am convinced that insurance companies are pure evil! We have private insurance and have been paying a hefty bill each month for years. Now that it's time to collect they are playing this game with us. It's not fair and not right.

My advice to those of you who have medical bills like us is to make sure you keep all insurance and testing documentation. I am sure glad I did! Also, make sure to log your phone calls. That is another thing that kills me.... the amount of time I have spent on the phone on hold or talking to others trying to resolve this has been unreal. Now they have a system at the hospital where you have to push "1" to continue to hold. That means you can't put the phone down for a second. You have to put your life on hold. The voice-activated ones are worse! Try speaking to a computer when you've got screaming kids in the background... it's nearly impossible! Of course, my kids have a phone radar. They know when I am on the phone and immediately their volume goes up by 300%.

I will update you all on how my daughter is doing after her January appointment. All we can do right now is pray that we are doing the right thing. It's basically in the Lord's hands right now, so I can't stress about something I have no control over. She is such a sweet spirit and warms the heart of everyone she comes in contact with. I know she's got a greater purpose on this earth. She's definitely a leader and a friend to everyone she knows. I can only imagine the woman she will one day become.
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I wish you all a very Merry Christmas
and a Happy New Year!! May 2009 bring
you peace, joy, and prosperity.
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The Most Important Meal of the Day

We can go without lunch... We can go without dinner..... But heaven help us if we skip breakfast!! It is the most important meal of the day and it usually determines what kind of day we will have. When you have children with autism or ADHD it is critical that they get a healthy breakfast. I've had some requests for quick and easy ideas for breakfast and I thought I would post that now.

My most favorite thing to make is eggs. I have discovered an easy way of making them. All I do is take one egg and scramble it in a microwave-safe bowl. I then sprinkle whatever I like on top. Some suggestions are: REAL bacon bits, cheese, shredded or chopped-up ham, and left-over taco meat (trust me... it's good). You then microwave it for one minute and you have an instant omelet. I sometimes fold it over and top with salsa. It's definitely quick and easy.

My next favorite thing is pancakes. I make large batches and freeze them and put them in Ziploc bags. All you have to do is pop them in the microwave for a few seconds and you've got breakfast! You can add anything to them. I have even added fiber to them. You don't have to use sugary syrup either. If you are concerned about sugar intake then top them with preserves or apple butter. You can also make them into sandwiches. My oldest loves the McGriddle sandwiches from McDonald's and you can make your own at home. Also, there are low sugar syrups out there and they come in a variety of flavors.

Another thing we love to eat is oatmeal. I usually don't bother buying the packets. I make my own. You can make it with milk instead of water to make it creamier. I love to add cinnamon to mine and it's so good for you. There have been studies that show that just 1/2 a tsp. of cinnamon can lower your cholesterol and even help with regulating blood sugar in people with type 2 diabetes. (This is my source: http://www.healthdiaries.com/eatthis/10-health-benefits-of-cinnamon.html) One thing I used to do for one of my kids was put the oatmeal in a blender with a little bit of milk before cooking it. That will change the consistency to a creamier texture and you can even feed it to a baby that usually gags on it. My youngest loved it that way!

In the South we eat something called grits. It's basically a type of cooked coarsely ground cornmeal. We love to add cheese to ours. It's nice and salty and my kids all love it. They also sell them in various flavors and I love to try them out. My favorite is the cheddar cheese flavored kind. My kids love to eat them with eggs in the morning.

My kids LOVE to eat egg in a nest. It's basically a piece of toast with a hole cut out in the middle and you fry the egg inside on a skillet. You can make these ahead of time as well and freeze them. However, they don't take too long to make so I usually don't do that. Another thing along this line is french toast sticks. I dip wheat bread in egg that has been scrambled and has cinnamon sugar in it(coating both sides) and then just fry it up in a pan with butter. I sometimes sprinkle more cinnamon sugar once it's done. Then I cut the slice into four strips and give them different sauces such as syrup, preserves, cheese, or anything else to dip them in.

Of course, there is always the bacon, sausage patties, and links. I try not to feed them these things too often. My neurologist told me that nitrites and the preservatives in these things are not the best thing for brain development. We will have these usually when we are on vacation or if we go somewhere out to eat for breakfast. You CAN find some healthy alternatives out there such as Turkey bacon and sausage made of higher quality ingredients.

I hope this helped some of you. Maybe some of my ideas will inspire other ideas for you. It's hard when you have a child that has allergies or sensitivities. Trust me... I know. However, there are a lot of options out there for us. My daughter can't have chocolate, but we get carob for her. Also, if your child is allergic to eggs that can be a challenge but it's not impossible to substitute. I found this neat article online: http://vegetarian.about.com/od/vegetarianvegan101/f/eggsubstitute.htm (It discusses how you can replace eggs in recipes.) Hope this helps!
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Today's the day to try something new!
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Mystery Diagnosis

I have had numerous people ask me what exactly happened to my daughter. Those who have known her for years can definitely see a change in her. It's a mystery and unfortunately is yet to be resolved on paper. However, I have my theories and I am prepared to explain what I think TRULY happened to my daughter.

When my daughter was born she was healthy and strong. She met all of the milestones on time and we did not have any reason to worry about her for the first 18 months of her life. She had great eye-contact and was very social. She also ate very well and slept like she should. I also remember her first words being directed towards her oldest brother (with whom she is still very close) and how sweet it was. I felt good about her progress.

Her language skills continued to progress. She was making more sounds and attempting to communicate. It was so cute listening to her. She liked her pacifier a lot and so I tried to limit her use of it so that she would not be hindered in any way. I read her lots of books and tried to spend as much time working on vocabulary and animal sounds. She was doing better than the boys and so I was optimistic that she would eventually talk.

I will never forget the day that I noticed something very odd. My daughter was a little over 18 months. I had placed her in a high chair in the kitchen and she seemed so content. She was sitting there for probably 15-20 minutes and I noticed her hands were turning kind of purple. Her feet were also a weird color. I touched them and they didn't feel cold. It definitely wasn't cold inside the house either. At first I just thought that perhaps she had been sitting there too long? I picked her up and held her for a few minutes. Her hands and feet eventually returned back to their normal color. A few days later I observed the same thing. She was sitting on the high chair and I noticed her hands were a weird color again. Also, this time I noticed her lips looking a bit different as well.

I decided it was time to call the doctor. I called the "Nurse's Line" and told them what I had observed. The first thing they asked was what I had fed her. I knew where they were going with this.... (No...she did not have orange nose or orange skin from the orange veggies I was feeding her at the time.) The nurse I spoke to told me that it was normal in babies to see the blue hands and/or feet since their circulatory systems are still developing. She continued and said that if they stayed that way then to give them a call, but if they returned back to normal then it was okay. I said, "Yeah... but she is 18 months...is that normal?" She reassured me it was. Of course, deep down in my gut I had a feeling it wasn't. It's interesting how the mind works. I had my doubts, but of course I wanted everything to be okay with her. So... I joined the "Denial Club" and went on my merry way.

At this time I started to notice that other kids her age were weaning their second naps. They were sleeping a lot less. My daughter would sleep a lot!! She would take about two naps a day and they were never less than two hours long. I remember a few times when she slept about six hours total and I mentioned it to my friends and they were shocked. I guess I had not realized that she was sleeping half the day away. They asked me if she was getting sick and I explained that it was normal for her to sleep that much. (Remember.... I was still in the "Denial Club" during all of this.) I began to take notice and started keeping track of her sleeping pattern.

We had begun potty-training and I was so excited. I had not been able to start potty-training before the age of three and so this was a first for me. I was thrilled to see that she could actually stay dry during naps and that she was showing an interest in going to the potty. However, she regressed and we were back to where we started. I tried everything I could to encourage her, but nothing worked. It was definitely frustrating.

By the time my daughter turned two it was obvious that she was lagging behind in her speech. Since my older two had to have speech therapy it wasn't shocking for me. I decided to wait just a few months to see if perhaps something would "click" in her. However, I didn't see any improvement and I could tell she was starting to get frustrated. Her social skills were also lacking and I saw a change in her. She started to act differently. I couldn't communicate with her and so we would have more outbursts and tantrums. I decided it was time to get her evaluated for Early Intervention and that's what we did.

She was evaluated and found to be more than 25% delayed and so she qualified for the program. They tried to test her hearing but she screamed so much that they couldn't do it. She was very sensitive to anyone touching her. She would "freak-out" whenever anyone wanted to look into her ears. (This was also when we found out that she was having optic seizures or "staring spells".) The lady that performed the evaluation suggested I take her to a neurologist. I am so glad that I listened to this "angel" of mine.

I was so excited because they came to my house and she didn't have to go to a daycare. At this time I was really paranoid about putting her in a daycare when she couldn't communicate. My fear was that something would happen to her and she wouldn't be able to tell me. That fear was actually validated by the speech therapist. That made me feel so much better. I love all my children the same, but there is a certain feeling of vulnerability when it comes to daughters. It's not until you have one that you can understand.

Of course, it wasn't easy getting the appointment to see the neurologist. We had to see the pediatrician first and then get a referral. Once we got the referral, it was another two months before we were able to get an appointment. FINALLY, we were able to see a Pediatric Neurologist named Dr. Corbier. I still give him credit for saving my daughter's life. He looked at her and examined her. He took many laboratory tests and performed EEG's and MRI. He did a very thorough exam. Initially he told me that she had some Autistic traits. He asked me how long she had walked on her "tip-toes" and I had not even noticed that. I estimated that she had started doing that at about 18 months? I thought it was cute and had not realized it was actually a symptom. Dr. Corbier told me that there was nothing wrong with her feet. She had a great arch and wasn't flat footed. He told me that her hips and legs were perfect. He then asked me about the staring spells and how often I had observed her doing it. I told him that I didn't realize that's what they were until the Speech Evaluation was done. I told him that she would "zone out" while watching t.v. and sometimes while in the car. I asked him what was significant about that since I had noticed my older boys doing that as well when they were young. He explained that in a TRUE staring spell, the child will not respond. You can call out their name or even touch them and they won't respond. He asked me to keep track of it and bring the information with me on the next appointment.

At the next appointment we sat down and discussed the test results. He was a bit concerned with some of them. Her serum copper was so low that he wanted to repeat it. Her ceruloplasmin was also extremely low. She had some other abnormal values that he thought was worth following up with. Then he talked to me about doing something kind of different. He mentioned that in some kids, changing the diet made a difference. He gave me a diet that was called "Casein/gluten-free diet" and explained it to me. (It was basically a dairy-free/wheat-free diet.) He told me that I should also give my daughter a certain liquid supplement that he strongly suggested. He mentioned that in some kids, milk will turn into a substance similar to morphine. That was shocking to me. However, it would explain why my daughter slept so much. She drank a lot of milk! He also said that milk has a lot of things in it that is not great for brain development. He gave me his website address and told me to read more there. THEN... he mentioned that some people believe that vaccines have something to do with neurological problems in children. Don't ask me why, but when he said that a light came on inside my brain. It was an "A-Ha" moment for me. I listened to him and was determined to do some research and find out all I could.

We started the diet in phases. I thought it was a very radical step and I was kind of skeptical about it. We changed to soy milk and even tried some soy cheese and similar products. She actually did well. All the kids transitioned to soy very easily and I was excited. Within a week, she began to show signs of progress. Her vocabulary doubled! Then after the second week she actually said her first sentence. I was so thrilled!! Could this be a coincidence? Why did a change from milk to soy make such a difference? I was determined to find out!

I did my research and found out that there were many parents out there in the autism community who had similar stories to tell. Traditional medicine does not believe in this and that is why I had never heard about it. Why aren't doctors willing to look into these findings. It's not medicine...that's why. This is a brief explanation of some theories: http://www.autism.org/leakygut.html
My own observation and conclusion is that it's definitely worth a try and it's NOT going to hurt your child if done properly. Many parents already believe that milk, beyond breast milk, is not necessary anyway. Many parents believe that the calcium in milk is not absorbed easily by the body anyway and that there are better ways of getting it. There are also many who believe that there are too many things in milk that are NOT good for kids. In my opinion it's definitely worth a try. Here is some good information about soy milk vs. cow milk: http://ask.yahoo.com/20021106.html

You can do your own research and find thousands of websites devoted towards educating parents about this issue. The main thing to remember is that you will need to make sure that your child is not lacking in any vitamins. That is why Dr. Corbier made sure we put my daughter on supplements when we changed to soy milk. Also, you don't want to go "cold-turkey" when changing a child's diet. Do it slowly and responsibly. You could actually do harm if you changed your child's diet to no milk and no wheat overnight. I will try and remember to do a special post on this controversial diet in the near future. :)

We continued with her speech therapy and when she turned 3 we put her in a local church Mom's Morning Out program. I met with the people and they were so sweet. I explained that she would be getting speech therapy services at the school and they were so accommodating. I felt like it was the perfect place for her and I knew that being around other kids her age would help her with her social skills. I was also impressed with the testing they did. They actually had a "play-based program" and they would test the kids and make sure they were making progress. The classes were small enough that they could individualize the program to meet the children's needs. It was awesome!!

In the end, she progressed to the point that no one knew anything was ever wrong with her. She stopped walking on her tip-toes after she turned 3 and I noticed her staring spells less and less. She matured and was more social. She was able to make and keep friends. It was as if she was another child. There is no "medical explanation" for her recovery. However, there are three things I did. First, we did the speech therapy. Secondly, we changed her diet. Thirdly, we stopped giving her vaccines. Speech therapy alone would not have explained her recovery. In my opinion changing her diet flipped a "switch" of sorts in her brain and she started to benefit from the therapy. Not introducing her body to any more toxins and/or vaccines was another factor that contributed to her recovery. You see.... it was no coincidence.

What happened to my child? I believe that it was vaccine injury. There is no other explanation. She was regressing.... she was showing "signs of autism" and doctors had no conventional solutions for me. She was not speaking....she would grunt or point... she would have tantrums and outbursts because of her frustration. Also, in hindsight I remember that her "episodes" where her feet and hands turned blue occurred at about the time she received her immunizations. This is no coincidence. Now that we know Sarah has Wilson's Disease it makes a little more sense to me. Her body has a metabolic defect. She can't process copper like others. Her ceruloplasmin is extremely low. I did my research and vaccines have tons of chemicals and by-products (such as formaldehyde, anti-freeze, metals, etc....) that probably cannot be excreted as easily for her. It was a cumulative effect on her body. As soon as we stopped vaccinating, then her body was able to start the healing process. She got better.

Okay....so there are two sides to the coin. What about Wilson's Disease? Well... we saw an improvement in her symptoms waaaaaay before we even diagnosed her with Wilson's. So, even though the doctor wants to claim that's the reason... it is not! As a matter of fact, we probably unknowingly gave her copper-rich foods during that time.... and we still saw improvement. Also, what about autism? Well... if she had autism, then we would not have seen such a dramatic change in her. It's true that in some cases, the symptoms do improve with age.... However, they don't ALL go AWAY... they just get BETTER. With her, the symptoms WENT AWAY! That's the difference. Except for the Wilson's, she is perfectly healthy and normal. She has friends and even the teacher has made comments that she is doing great in school.

The most frustrating thing about this is that when I asked the pediatrician about it, he did not even want to entertain the idea. Even after I mentioned that Dr. Corbier had suggested it, he rolled his eyes. I know I am not a doctor, but I am a mother and I know what I saw. I know what I witnessed. I can tell you what happened before my eyes. Now... do you blame me for feeling the way I do? Can you blame me for being so cautious? Do YOU have another explanation? I am all ears. :)
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"The important thing is not to stop
questioning" ~ Albert Einstein
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Being Your Child's Advocate

I have great respect for doctors. My great-grandfather was a doctor, my great-Uncle was a doctor, and I grew up around them so I know how much dedication it takes and all of that. However, it seems like the profession is changing. Doctors have more patients than they can handle. They also are enticed by pharmaceutical companies with "gifts" and incentives. Also, finding a "family doctor" is hard these days. There are hundreds of specialists and you have to get referrals from the pediatrician or general practioner in order for insurance to cover it. Those are some general observations I have made.

Now....what do I mean when I say you must be "your child's advocate" and why do I feel the need to post this? After going through what I have gone through I am determined to make sure that it doesn't happen to anyone else. I am breaking it down into five rules and I will try to be as brief as possible in explaining each one:

Rule #1: Doctors DO make mistakes. Luckily, I have a medical background and so I know a little bit about drugs and bugs. :) I worked in Chemistry and Microbiology in the laboratory for five years. That means I know a little thing or two about laboratory testing too. When my daughter started to see different doctors I made sure to keep copies of her laboratory testing and made a binder to hold it in. I also started to question doctors when they wanted to repeat testing. It broke my heart everytime she had to get her blood drawn. Not only that, but the insurance company started to give me a hard time about it as well. Make sure that you keep track of what tests they do and ask them why it has to be done. Once I asked the liver specialist why they were repeating a certain test and he came back saying that he didn't realize it had already been done. He went into the computer and was able to obtain it. Don't be afraid to speak up about it. It is your right to know. If the doctor gets perturbed then perhaps you need to find another doctor.

Rule #2: Follow your gut. It is my belief that mothers have been blessed with a special gift. You can call it "motherly instict" or "divine nature". Don't ignore it. There has been soooo many times when my children have been sick and the doctors did not believe me. However, I persisted and lo and behold something WAS wrong. The best example is with my daughter who was finally diagnosed with Wilson's Disease. She had all these abnormal values in her laboratory testing and although she acted and seemed healthy I knew that there was something wrong. I am so glad that I persisted. If I would have listened to the doctors who knows what the outcome would have been. We would have continued to feed her high copper foods and her liver enzymes would have continued to increase. I would have ended up with a very sick child.

Rule #3: There are alternatives to medicine. There are some doctors and parents who don't think twice about administering a drug to a child. Just like you should be careful about what they eat, you should also be cautious about the drugs you give them. Do your research. There are some drugs that are recalled or even have terrible side-effects. I have already posted the information on the ADD drugs my #1 took and all the trouble we had. Also, I think it's important to note that there are many herbal remedies out there and they work! My youngest had really bad teething and my friend gave me some chamomile. It was in liquid form in these plastic capsules. She said she kept them in her purse. Let me tell you......it worked!! I think it is possible to combine traditional medicine and alternative medicine. I do it and it works for me.

Rule #4: Stand firm in what you believe. Right now I believe that vaccines injured three of my four children. I think it's because they were given too many too soon. I have done my research and I don't feel comfortable with the schedule that the doctor wants to follow. I am following a different schedule that I feel good about with my baby. So far he is doing great and he is the healthiest of all my children. There is an epidemic of autism in the world right now. I am trying to educate others (including the doctors) about my experiences. I am hoping that one day someone will listen. I just wish that they would have enough of an open mind to really listen to me. They always just get defensive when I try to talk to them about it and then proceed to use scare tactics to get me to give my baby the 6+ vaccines that are due that day. I also have mothers who feel threatened for some reason. I guess they feel like I am offending them when I say that vaccines can injure some kids. I don't mean to insult anyone.... I just try to warn others of what happened to me. It's not until something hits home that you really take notice. Know what I mean? So....whatever it is that YOU believe, stand firm in your decision. If you know that your child wouldn't benefit then speak up. If you see that they are not taking things as proactive as you'd like then speak up!

Rule #5: Do your research. There are so many resources. You have the library, book stores, the internet, and physicians. Read all that you can. Ask lots of questions. Find out all you can about doctors in your area. Look them up online and find out their history. It doesn't hurt to get a second opinion if you question something. Most people spend days of research and looking when choosing a car. The same care should be taken when choosing a doctor. The best place you can go is usually a Children's Hospital. If there is one in your area then you should consider it. They usually have specialists in many areas and are experienced pediatricians. My daughter has a TEAM of doctors who are caring for her. It is also a great environment and if your child has to spend a lot of time there then you want them to be comfortable.

My final thought is this....don't be afraid to speak up if you don't understand something or if you disagree. The treatment of your child is a team effort. You and your doctor should have the same goal: the well being of your child. However, in the end you know your child better than anyone, and a doctorate is no match for a mother's love.
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A mother's love has no boundaries.
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What is Wilson's Disease?

I thought I would start by talking about Wilson's Disease. It has been about six months since my daughter was diagnosed with it and two years since I first heard about it. Let me tell you about that since I think it is critical. If your child has any issues with copper then PLEASE explore the idea of ruling out Wilson's. Don't wait because the sooner you catch it, the better chance your child will have of leading a normal and relatively healthy life. When you google "Wilson's Disease" there is really not too much information about patients who have it who AREN'T sick or struggling with liver disease. The reason is....most patients don't find out until they are symptomatic. Doctors told us that our child is an "enigma" of sorts. They don't really know how to treat her. That is so reassuring.....NOT!!

Wilson's Disease is caused by a mutation in the ATP7B gene. Usually it is diagnosed by laboratory testing (abnormal copper levels, low ceruloplasmin, elevated liver enzymes) and looking for a ring of copper in the eye called a "Kayser Fleischer" ring. These are good indications that you should have further testing. The genetic testing is outrageously expensive and so unfortunately, you have to do all the screening tests first. (Otherwise insurance won't cover it.) Take it from me, you don't want to skip any steps. I am still fighting for insurance coverage for my family for the genetic testing we had to do. You see....once you find out your child has this genetic mutation there is a big chance that others in your family might have it too. You definitely don't want to wait until there are symptoms. By then, your liver could be ruined and you could have copper built up in your brain. All of this could be avoided by a simple blood test! All you have to do is test serum copper. Imagine that....a simple blood test could prevent this. Then why don't they test babies? Well...that's my big crusade. I am determined to make that happen. The same way they test babies for other deficiencies they could test the copper. My mom told me today that she found out they have added the serum copper level to the newborn testing in her city. I am so excited that some progress is being made.

So...why should this matter to you all? Well, look at the statistics:
"One in 100 individuals in the general population carries one abnormal copy of the Wilson disease gene. Carriers have one normal and one abnormal gene. All (100%) children of those afflicted with Wilson disease receive at least one abnormal copy of the Wilson disease gene. One half (50%) of a carrier's children receive at least one abnormal copy of the Wilson disease gene."

In my opinion, this isn't such a "rare" disease after all. We found out that my husband and I, along with our other three kids are carriers. If any of my children marry a carrier and have children then they have a good chance of passing the mutation to their kids. It's good to know. We will definitely educate them to always be mindful and have it in the back of their minds just in case any of their children happen to have liver issues. At least they could tell their doctors that they need to screen for Wilson's.

Always trust your instincts. If you feel like there is something wrong with your child, don't just dismiss it. My daughter's laboratory testing showed something was wrong (she had extremely low copper with value of 7 when normals are 90-180, slightly elevated liver enzymes, anemia, low ceruloplasmin, among other abnormal values) and even then the doctors wanted to dismiss it. I still don't understand that. I went online right away to research and then talked with other doctors. I got a second opinion, then a third, then a fourth. FINALLY, I was blessed with a doctor that was a Genetic Specialist and Pediatric Neurologist. I definitely hit the jackpot with her! She had a lot of experience and although she was hopeful that my daughter did not have Wilson's, she still tested her for it. I still can't get over how easy it was to diagnose her in the end.....with a simple blood draw. We had done EEG's and MRI, 24-hour urine copper tests, multiple serum copper tests because the doctors did not want to believe the levels were right (that is another loooong story right there), various other laboratory testing, and even did a tissue culture from her arm to send to Europe for further testing. In the end, it was the ATP7B genetic test that proved it. The technology is there and we need to educate the doctors to use it.

My biggest frustration right now is that since my daughter is healthy the doctors pretty much don't have any answers for me. For now, I am following a low copper diet (because I researched it and mentioned it to the team of doctors), but otherwise I would be doing nothing else. There are no drugs she can take because the side-effects would not be worth it and although her liver enzymes are elevated, her urine copper is within normal limits.

I feel VERY blessed to have a healthy child and I want to keep her that way. Therefore, I am going to keep on doing what I am doing (since it seems to be working), and I will treasure every day I have with her because I know that there are many parents out there who are not so fortunate.

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Make an effort to listen to your child today....they might just surprise you.
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It's a new day!

With all the things I have to do....why in the world would I start up a blog? Well, I think it's because of THAT reason that I feel I must do it. It will be an outlet of sorts for all my inner frustrations mingled with a little bit of wisdom I have acquired over the years. I have so many things I want to tell others and this is a great forum.

My children mean the world to me, but boy....has it been a ride!! I think that I had the best of intentions with each of them, but they don't come with instructions. After a lot of soul searching I eventually learned that we must accept what we are given and sometimes that in itself is the lesson. We can't control everything, and so we must always move forward and look at the bigger picture. Only then will we grow.

Before I begin this mission of mine, I would like to give everyone a synopsis of why I am doing this. I want everyone to know what my motivations are. Even though this will be a long post, I am sure many will have many questions. I plan on answering those eventually and I will include more medical information to back up my claims.

I have been blessed with four children. My oldest was diagnosed with ADHD at the tender age of 3. My husband and I didn't want to believe it and we just dealt with all of the social and misc. issues without any medical intervention. When we felt we had no other option, we turned to medicine. We started the regime and saw our child waste away before our eyes. We no longer had our care-free sweet child but a "zombie" who would have outbursts of anger without any warning. After a year, we decided that medicine was not the answer. We turned to psychologists and neurologists for help and found MANY other options we didn't know about such as diet and behavior modification. We now have an almost twelve year-old child who is doing great in school, is a Star Scout, and is a joy in my life. He still has issues, but they are manageable. I will expand later about our journey with our oldest child in a future post.

My second baby was born healthy and strong. He reached milestones before his older brother such as walking at 9 months. However, at around 2 years of age we saw something happen. He wasn't talking like he should and we knew that something was wrong. (Call it mother's intuition) We talked to the pediatrician and of course they said he's got the "younger brother" syndrome where others talk for him and so he doesn't need to. Of course, I was relieved and so I didn't worry about it. Unfortunately, by the age of three he still wasn't talking very much and I also noticed his fine motor skills were not developing right either. We had him tested and he was diagnosed with PDD (pervasive developmental disorder). My husband and I didn't want to believe that either. However, he did receive the occupational therapy and speech therapy. We saw a great improvement and eventually came to terms with it. We accept that our beautiful, smart, sweet child has high functioning Autism. It has taken me YEARS to accept. However, it just means we have to work THAT much harder with him. I have faith that he will grow up to be a fine young man and do whatever it is that he desires!

My next baby was a girl! I was thrilled and anxious at the same time. Would she be "normal"? Would I have any "issues"? Well...she started off as a normal and healthy baby. As she grew up I tried not to be paranoid. When she didn't walk at 12 months I didn't freak out. She finally walked at 15 months. I was thrilled when at 9 months she said, "Hi Gary!" At least I knew that she would talk. Well, that was short-lived. At around 2 years of age we noticed she was walking on her tip-toes. I thought it was cute, but later I would find out that it was a "symptom". She had started to get interested in potty-training and regressed. She also slept a lot....more than usual. She would take two long naps a day and then go to bed early and sleep until the next day. I have to admit that I was thrilled! Who wouldn't be? I was a busy mom of three and to have that extra time was wonderful! However, her speech was almost gone by the time we had her evaluated. Then came the bombshell....the speech therapist noticed she was having "staring spells" also known as "optic seizures". I had no idea what that was. We sought the help of a neurologist who told us that we needed to do a bunch of tests and figure out what was happening. She was showing some signs of autism but he wasn't going to diagnose her just yet. This was a journey that is not over to this day. This same neurologist told us that it was possible that vaccines may have done injury to our child! Let me repeat that: A MEDICAL DOCTOR TOLD US THAT IT WAS POSSIBLE THAT VACCINES MAY HAVE CAUSED DAMAGE TO OUR DAUGHTER!! WHAT??????!!!! Vaccines are supposed to be safe. Well....let me tell you all that we are misled to believe that giving tons of shots to a little newborn baby is safe. My daughter was only 6 lbs. 2 oz. and she received the equivalent of 16 shots before her first birthday....including a hepatitis B shot before she was a day old! This doctor (I like to call him our guardian angel) tested Sarah and among the tests he found that her copper levels were not normal. Unfortunately, this doctor moved away and we spent the next 2 years trying to convince other doctors and neurologists that something was wrong with our daughter. We FINALLY got her an appointment to a Children's Hospital doctor and we got a diagnosis. She has Wilson's Disease. It's a very rare metabolic disorder and she would haved died if not treated. So....now we had a diagnosis, but unfortunately it did NOT explain her symptoms. The only thing it explained was her elevated liver enzymes and her copper levels. Sadly, none of the doctors want to even touch the vaccine issue. They are all so closed-minded about the topic. We have filed a suit with the Omnibus Trial hearing and I will definitely keep you all updated on that.

My fourth baby was born healthy, strong, and eager to get here. I literally did not have to push him out. He was born in less than 15 mins. from the time I reached the hospital and he actually looked up at me with his arms outstretched. In the first few minutes of his life I knew he was smart. I could see it in his eyes. My husband and I had a plan with this baby. We knew he would be our last and we weren't going to make the same mistake with him. We told the nurse, "We don't want him to get ANY shots!" She looked at us as if we were insane. "No shots?" I nodded. Then I whispered to Gary, "Follow her... I don't trust her." And guess what? She was actually going to give him the HEPATITIS B vaccine!! If Gary had not stopped them, they would have administered it to him. (Thank goodness for mommy instincts, huh?) He came home jaundiced and we had to put him in the biliblanket. His nickname was "gloworm". We had a heck of time getting him to eat. I tried to nurse him and he started to not want to suck. I was so scared. It happened really quickly, but he dropped down about 3 pounds in a couple weeks! I was taking him in for bilirubin check AND had a nurse come every day to see him and test him and NONE of us noticed how much weight he had lost! It was insane!! He ended up in the hospital for a couple days with dehydration and was lethargic. I thought I was going to lose him! Once home, we had to treat him like a preemie. I had to milk the nipple on the bottle (yes...I decided to pump and supplement with formula) and I had to do this every TWO hours! I didn't get any sleep during that time and so to be honest, I don't remember much. All I know is that he is so healthy and strong now... still picky eater, but healthy. We worked out a much safer vaccine schedule and he is doing great. He is 2 1/2 and is talking more than my others at 3 1/2. He is socially on target and doing great in preschool. The teachers just love him. They told me the other day that he is good at following directions! Imagine that.... a two year old who follows directions?!!

Everyone is entitled to their own opinions...... however, I have proof that something happened to my babies. I vaccinated my first three "on schedule" and they all have problems. I waited for our fourth to be two months before giving him ANY vaccines. At that point I only gave him one and made sure that he didn't have any reactions (such as fever, fussiness, or swelling) before giving him the next one a couple months later. There are some vaccines that I am still debating in my head about such as the chicken pox vaccine. I don't know if it's worth the risk. I am definitely NOT giving him the hepatitis vaccine. That one is totally insane. He is healthy and "normal" in every way. You tell me....what other explanation is there for the cause of problems with my other three? My doctors tried to say there are environmental toxins, etc... However, my youngest has been exposed to the same "environmental toxins". What about diet? Well...my youngest actually is a picky eater so that's definitely not it. Let's see.....what about genetics? Well....they all have the same mom and dad.

I believe that genetics does play a role in all of this. I think that in some children they are born with the inability to clear out all of the toxins in the vaccines. I have medical proof in Sarah's laboratory results that her ceruloplasmin is low and so she can't get rid of copper among other things. Who knows what deficiencies the other kids may have? Also, who's to say that there aren't millions of kids who have health issues caused by vaccines but doctors are not willing to look into it? All they look for are "adverse reactions" and even then...they won't report them unless it happens right after the vaccine was given. What if there is a cummulative effect with vaccines? Maybe one vaccine doesn't do harm, but then the next one is given before the baby's body can clear out the previous toxins and then you give then a THIRD shot and a fourth, and so on......

The truth of the matter is that no matter how good a parent you are, if your child has autism, ADHD, or other issues you feel like a failure. You see.....my children don't have Down's Syndrome or any obvious trait that would let others know. When I go somewhere and my seven year-old is eager or anxious, I have to be careful and mindful about how he may react to things. Instead of using his words, he may react like a three year-old. How do you explain THAT to other parents? In their eyes they see a big boy (who actually looks like he's at least 8 years old) who just pushed their five year-old out of the way as he was trying to get to something on the other side of the room. We work on impulsivity and dealing with emotions on a daily basis. Our work is never done.

I am grateful for a wonderful husband who supports me and loves me. He also is the most patient man you will ever meet. I know that having special needs children is hard on the moms, but dads are often overlooked. It takes a patient and loving hand to guide children, but it also takes a lot of discipline in the form of structure and positive reinforcement. Spanking and yelling at kids only makes the parents feel better. It will resolve the problem temporarily, but if you are trying to teach a child how to deal with life situations then you have to teach them in a way that they will learn those skills. Now...don't get me wrong, we spank...but that is not our main form of discipline. Besides, in this day and age you can't spank a child in public anyways....so what would you do if you were at the store and your child acted out? Spank him in the van? NOPE! You'll get caught on video and wind up on CNN.

There is lots more information that I would love to share with you, but I fear I have written a book already. In the future, I will give you all information I have learned in my two years of research on vaccines, and I will hopefully spare many of you the grief and pain of diagnosing and treating children with Wilson's Disease.

For now, I will just exhale and tell myself, "It's a new day!"

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Hug your littles ones today (if you haven't already) and tell them how much you love them.
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