TOPHER

Christopher, or Topher as we call him is 8 years old. His father is terminally ill and mentally and physically disabled. He was born after his fathers illness took over and does not have a good relationship with him or good bond or a lot of good memories of when his father lived with us. His older brother does and that upsets him, he is looking for that fatherly love.I have since remarried and have a great husband who has been a good father to my sons. Christopher fights him often but for the most part they get along, and Topher calls him Dad. I can tell he is angry about so many things but he is closed about his emotions often. He has worries and problems that no child should have. He worries his father will die, they only see him a few hours every other Saturday and of course it isn't enough for children. Then there is his own health...

First, back ground on his dad. Tophers dad has Limbic Encephalitis, cause unknown, He has seizures, no short term memory. He was tested for so many things but nothing was ever conclusive. He has several positive antibodies, most important to the story are anti- TPO, thyroglobulin antibodies, GAD antibodies, a positive ANA. These can affect many things and reported to cause several autoimmune problems.

In 2007 my baby boy who was once funny and out going and full of energy became sleep y and tired all the time and wouldn't eat like he used to . I took him to the pediatrician and had his thyroid tested. The levels came back to high and he started medication and was tested for TPO, thyroglobulin antibodies, GAD antibodies, and ANA. He came back with very high titers of TPO and thyroglobulin antibodies and negative GAD and a positive ANA. More tests showed that he also has a positive Immunoglobin A and he was positive for ACh Receptor Antibodies both binding and modulating. These antibodies on there wn can cause several autoimmune diseases. The ACh Receptor antibodies can cause Myasthenia gravis or be a sigh on lung cancer or thymoma. He had an MRI of the chest and brain and both were negative and continued to take his thyroid medication.

We changed endocronologist because the one he was seeing didn't follow up frequently enough and we could only see him once a year. I found a new doctor tat we see every three months and has been following him. We saw him March 16, 2010 and he noticed that his thyroid levels don't add up. Both his Free t3 and tsh were high and they are supposed to sort of opposite, if one is high the other should be low. His words to me were "this is weird". Not the words you want to hear from a doctor. I had told him when first went in there about all of the blood work and his at fathers medical history, obviously he didn't listen or bother to pay attention and apply the info to his care. Topher also see the same neurologist his father sees every 6 months for a neurological evaluation to be sure we catch any signs of neurological problems early and treat them so we can try to prevent damage if he does show signs of the same disease process as his father. The chances are 3-5%, and they really don't know that the antibodies had anything to do with their fathers illness.

So now here we are back to the place where we started. He has to see a Rheumatologists in May to see what ideas or information she might have about the antibodies and other issues. He did see a geneticists, who had no idea what to do. I am praying for some clear cut answers, but with my experience with their father, I am sure they will be few and far between. Right now he is off the thyroid medication and will be retested for his levels in a few weeks to see what they show without the medication.

This of course is part of the reason my baby is troubled. He has grown up watching what ever diseases or illness his father has destroy him little by little. He understands that some of his blood work matches up with his fathers and is smart enough to make the assumption and put it all together and make the assumption that he will become ill like his father. It has caused some behavioral issues. he acts out and is angry, and I don't blame him. He's 8 and length of possibilities a childs mind can reach is endless, as is mine. If I am in a constant state of cconfussion and worry I can only imagine what he is going through. The fear and frustration of it all. As for me, I have fear, anger, confusiona dneven greater frustration. I am frustrated that I can not get a straight answer from the doctors and specialists about what all of the blood results combined with his fathers illness and blood results mean. I don't know what the future holds for my baby. All there is left to do is sit and wait and wonder.