October 11, 2006 mcfadyena

Our Upcoming Duke Visit

So there’s not a lot to update, although we have been very busy. I have been talking with Duke about CBT’s…everything about CBT’s: what the procedure is, how it works, how effective it is, how many other kids have gotten it, etc. I have also talked with other parents who chose the procedure for their children. And currently we’re trying to figure out what appointments Trey will have at Duke, since he’s already had many of them at Children’s. And then cost…we’re hoping MSP might pay for the $25,000 plus assessment, but we don’t know yet. In a nutshell, it seems as though CBT is a last resort at this point in time. It is dangerous and not proven effective. However, it is also not unproven (it is such a new treatment) and it is the ONLY treatment for kids with brain involvement. So we want to talk to Dr. Muenzer and Maria Escolar (she does the neuropsychological development testing) and find out their thoughts on Trey’s brain involvement. Intrathecal therapy sounds promising, but it isn’t even in clinical trials yet, so it is therefore still years away from approval…and since we’re in Canada, who knows when we’d finally get it. We’re really looking forward to our trip. Hopefully it will give us some answers and help us make some decisions.


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