Update

Jack has been doing OK. He and his brother have been sick. I took them last week to the doctors. They both had bronchitis. Jacks brother is better, Jack still is not. He also got his sinus x-ray done and it did not look good. The allergist wants Jack to add a extra 10 days on to the 10 of antibiotics he had already been prescribed for the bronchitis. This is a total of 20 days on antibiotics. After that he wants him to get another x-ray. We went to the ENT today. He said that he would wait till the summer to get another sinus x-ray. He thinks Jack has been exposed to a lot of radiation lately. He also is ordering some immunoglobulin tests. He said Jack definitely has chronic sinusitis. He said to continue with the allergy testing and take that all the way. Then he will go from there. If in the summer there is the same pattern( Jack has had since birth) then the best bet would be a CT scan of the sinus. He said the removal of the adenoids and tonsils did help the snoring and obstruction. That is good from the disease point of view. As for the chronic sinusitis the next step would be a surgery. He said Jack is pretty young for that so we will exhaust all the other possibilities first. I also talked to him about a article I read. He encouraged me to talk with both of Jacks specialists for the mitochondrial disease about it. It was a possibility and something he had read about.

The UMDF sent there news letter as always. There was an article that made me feel for once not alone. It was about kids and adults with Jacks disease and how they are finding they have recurrent infections. Never seeming to recover fully from colds. Having a cold turn into bronchitis or pneumonia's. Having to be hospitalized frequently when having pneumonia or bronchitis and other recurrent infections. Parents feeling like antibiotics just don't seem to help or be enough. It explained why with mitochondrial disease this is. It made so much sense. Long story short they are starting to use low doses of immunoglobulin injections for people with mitochondrial disease with recurrent infections. The article sounded a lot like what we have been going through with Jack since birth with( the one of many issues) him always being sick. I will talk with his specialists further about this. The people in the article have seen improvements. It is definitely something to talk about.

Jack has still been having the tetany and muscle pain. The tetany has been a bit less this past week. The tremors and leg pain more. I just wish I could figure out a pattern. it just seems there is not one.

I could make Jacks appointments, searching for answers, and daily chores a full time job. I thank God he gives me the strength to do all that, work and more.