After spending 5 days at All children's we are home. The IV meds got rid of her h/a but it is back now. The neurologist we worked with there, Dr Casadonte, hoped that if we broke the cycle they would be manageable with oral prescription meds. It is too early to say if they will be better on a daily basis, but last night was a bit depressing as she complained of a severe headache once again. She is on two new daily meds, and one migraine rescue med but she can only have it twice a month. Hard to choose which two days she will take it when she has bad headaches every day. Meanwhile, a new surgery was offered- called a subtemporal decompression. I am hoping the power of the internet can help me find other families who have tried this. If you or anyone you know with slit ventricle syndrome who has tried this procedure please contact me at sarap@cfl.rr.com She will be trying biofeedback today, so we'll have to keep our fingers crossed on that one.
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