Not much has really been happening over the past week. Mira is still averaging about 1-2 seizures a day, mainly when she is waking up or falling asleep, which is very common, according to her neurologist. We are still having difficulty getting her ketones up and within a 'therapeutic' range (so to speak) which could account for her seizures not being completely controlled. We are going to take her in to CMH next week to have her labs done again, just to see where she is with the diet and to see how ketotic she is. Chances are, we are going to have to supplement with Ketocal in order to boost her ketones. Overall, the diet is proving to be a success, we just need to get her into better ketosis. We are moving forward, slowly but surely.
We did get her Jenx Monkey Stander last week and she has been using it for PT at home. She broke it in the first day by throwing up on it! Probably not a good idea to get her in it right after breakfast........
1 comment:
Ask about stiripentol...it's a French drug and would ahve to be imported. One mom from the IS group got it for her son...it was at the bottom of a long list and WORKED!
Jen mom to Austin
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