Clouds, May 2010

Clouds, May 2010

Saturday, March 17, 2012

back to square one

So we recently learned that the trial we have been waiting to enroll Hayden in, for an entire year now, is finally underway. The clinic has approval to begin evaluating prospective study participants for inclusion.

Just last night I received a call from one of the Dr's in the study, and over the phone I answered a bunch of evaluation questions. As far as I was concerned, it was an exciting first part of the process and I was thrilled to get the ball rolling.

I grew somewhat confused as he's asking me about Hayden's reaction to certain situations, and I'm supposed to tell him a number from zero to three (three being the most severe). Question after question I'm responding, "no, that's not like Hayden," and "zero", and "zero" again, and "no he's the complete opposite of that..."
Until finally the doctor told me something I was not expecting to hear.

Hayden just doesn't fit the study criteria-- he does not even come close.

For this particular trial, the focus is apparently on people with FX who exhibit autistic-like characteristics vs ADHD characteristics; the latter being a much more accurate description of H.

After approximately eleven months of anxiously waiting, and investing so much hope, this was an extremely difficult truth to hear. Although I understand, and I would never support H participating in anything that is not appropriate for him, it is still terribly disappointing.

We will make an appointment to meet with the geneticist at the FX clinic again, and revisit other options. (Sometimes this journey feels particularly exhausting, already, and he is only a young child.)

Well, this afternoon Hayden saw a kindergarten classmate taking a walk up the road with her dad. He yelled out to her from the trampoline and luckily they had a few minutes to stop and join in the jumping.

And as I'm enjoying the sound of the endless laughter that comes from a couple of children bouncing away happily, I realize maybe I shouldn't be disappointed that H can not participate in the study after all. He has his fair share of fragile x challenges, but the fact is they do not include social withdrawal.
I hope the clinical study drug will benefit the other children allowing them to blossom socially as well. Underneath all of the fragile x "stuff" that gets in the way, they are all endearing.

We will have to figure out a different plan to help with Hayden's ADHD, anxiety, and other challenging behaviors. But in the meantime I'm going to enjoy watching that shining personality of his, and remain thankful that other kids who know him do enjoy being around him and the feeling is absolutely mutual. 

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