August 19, 2010 mcfadyena

No real answers

summer2010_08Well, we got Trey’s results. Although his score jumped 8 points from April’s tests, when Trey was sick, he did drop 3 points from his tests last July. So, he does not qualify for the trial, but his scores have dropped a bit, so we will be going back for another round of tests in another 6 or so monthes. Three points could mean nothing, but because we’re dealing with a progressive disease, it could mean something.
Dr. Muenzer spent some time talking with me. Basically, the vast majority of kids fit either into the severe category, which IF Trey fit into, he would be dropping approximately 10 IQ points per year by now, or the mild category, in which kids have physical symptoms, but absolutely no learning issues. Dr. Muenzer said that it does happen that kids fit into the ‘grey’ category with MPS II, which Trey seems to fit into because he doesn’t fit into either the mild or severe category, but it is rare, so rare that he couldn’t even comment on what kids who fit into the ‘grey’ category look like long term.
It is also entirely possible that Trey’s learning difficulties are unrelated to Hunter’s.
So the end to this journey is not over. We’ll go back in another 4-6 monthes. And I’m going to get back into yoga so that I don’t go completely crazy because I am very close to there right now. I think I’m going to have to figure out how to stop living on hold, because by the time we go back for our next round of tests, I will have been living the unknown for 5 years, and I’m really done with it.
On a positive note, we met a family in NC who was down there for the IT trial. Trey and Elijah (he’s the little guy with MPS II who’s getting the IT drug and is about 6 monthes younger than Trey) had an absolute blast together and Trey’s asked to play with him about 5 times since we left. Brooke, his mom is also great and it was really really nice to talk with her.


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