March 28, 2011 mcfadyena

Heading back to North Carolina

After a long wait, we have been asked to come back for final qualifying tests for the IT trial at UNC. We will be going back for the week of May 16-20. Trey will undergo a whack of medical tests, including: EKG, ECHO, physical & neurological exams, cognitive and behavioural testing, safety labs, hearing test, bronchoscopy, brain & spine MRI’s, ABR, and lumbar puncture.
The big one is the lumbar puncture (LP). If Trey’s pressure is over 30cm H2O, he will be excluded from the trial. If it is under 30, he will qualify. After that, the big next step is randomization; whether Trey gets randomized to drug or no drug. If he gets drug, he would be the next child to begin treatment. If he gets no drug, we go home and come back 6 monthes later to re-do the LP.
When Trey could potentially begin treatment depends on many many factors. I’ve tried to calculate when he might potentially begin treatment, but it is impossible. It depends on the children who go before Trey, of which there are two. It depends on scheduling of their respective trial sites, if their LP’s qualify them and if they randomize to drug or no drug.
All we know right now is that Trey is in line and that we are going back for that week in May. Everything else beyond that is up in the air. As I know more, I will update.


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