My 8 year old son was diagnosed 3 weeks ago with adrenaleukodytrophy, what a horrible disease. He has brain involvement, but does not have Addision's yet. My husband and I have fought with dr's since he was 5 years old that his behavior had changed. All they did was diagnose him with ADHD. A year ago, things got worse, to the point that I quit my job to pursue all options. My son now has some issues with gait on his left side, he has extensive neurological issues, confusion and perception, and he gets headaches almost everyday. We are in the process of making the decision of whether to try the transplant or not. I was wondering how other parents made the decision. We have seen specialists in University of Minnesota hospital, and they have told us that they cannot tell what would happen to him after. He has affliction in the back part and front part of his brain, and it is also in the middle. My son was a very active child, he was even a great football player up to this past year. He realizes that he cannot do most of the things that he use to. This has to be the hardest decision that my husband and I have ever had to make. I was wondering what experiences others have had with both doing the transplant and not. The drs have said that they have not seen a case like his, but once, and even that childs was not as bad. He seems to still be doing well, he can see, but is starting to have some issues, but he can still get around and can hear and eat. Please, we are looking to try and find answers to where others were at the time of transplant and what happened later.
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