I have been waiting for things to stabilize to update the good (or bad) news, but it fluctuates constantly- so I will just update.
Last week we increased a new seizure drug and his seizures decreased to only 2 a day!!!! But then Sunday he had a 6 minute cluster seizure with 28 spasms and the last several days he has had 10 clusters a day. At least they are shorter, but 10? We just went up again to see if it helps, and then we will take him off and try a new one. We might aim for one more geared toward infantile spasms.
With the diet- I am not convinced it is decreasing his seizures much, BUT it is helping his cognitive development immensely! Everyday he is more alert, engaged, and alive! So that make it all worth it.
Thank you for updating in the midst of everything you're going through. Tony and I started talking about hemispherectomies when you first posted, so I forgot to comment until now. What a difficult decision. I am glad the diet has some benefit, even if it isn't everything. The drugs sound like a lot of guess work. Hope it is settling down for you soon!
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