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  • And so, the journey begins…..

    , Posted in: Uncategorized, Author: admin (May 7, 2013)

    It was our third visit to the IBR for this Novartis study, but according to record-keeping, because we were given the drugs – or the placebo – to take home, it is day one.


    We had to fill out more questionaires and Luke went on his own for an IQ eval. He did it without much fuss and without his normal appendage – his ipad or DVD player. My gut tells me that the results were not indicative of a highly-functioning child, but that isn't news. We all have established that Luke is severely affected by Fragile X. And the silver lining associated with that is the boost we hope to see with the drug.


    So there's drug A and B twice a day for one week followed by drug C and D for a week. Then we go back again and get some more capsules. It is a double-blind test. No one knows what he is taking. But if he suddenly starts to talk, or shower himself, then I'll know.


    This doesn't come without anxiety. I mean, we've waited 12 years for this day, what if…. ? No, I won't go there….


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