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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