Monday, May 5, 2008

Searching for Solutions

I've gone through every food, every med and every charted keto note looking for a possible cause for Noah's three breakthrough seizures since the middle of February. Our super dietician, Karen, is really plugging away trying to help me find the culprit.

Yes it could just be that he is a growing child. But, at this point, I'm not accepting that answer. He was ill at the time and that causes the seizure threshold to drop. But he had several illnesses in the Fall that were far worse than these pasts colds without breakthroughs. So, I'm targeting one of two variables; PolyCitra OR Nano VM. Karen doesn't think it's the Nano. Whatever it is, it's wreaking havoc on his Specific Gravity. We are our children's advocates. I have to do the best I can because we don't want to see Noah seizing 150 times a year again.

My keto kid can catch his pee in his own cup! He brings it out to me for his urine test twice a day. How many kids can do that? How about this one...........He swallows three capsules at once with water. My 10 year old just began swallowing one capsule with water this year.

Noah rocks! I'm going to keep searching and fine tuning! We can't lose control now! I'm not going back to the scary & crazy existence we had for three years of GEFS+.

Pray for us!


Anonymous said...

Hi Cathy,
I'm so sorry to hear that Noah had some seizures! This must be such a huge disappointment for you.
Your blog is very helpful and full of great ideas!
My son, River, has started the keto diet about a month ago. He is also on Topamax and polycitra-K. He went 11 weeks seizure free, and then just when I thought we were safe because he was feeling better after an illness, he had a seizure. River is also SCN1A +, but his neurologists don't think he has Dravet's cause he is doing so well developmentally and only has the horrible status seizures.
How did you get the diagnosis of GEFS+? Did you or your husband test + for a mutation, or was it something that became apparent over time as Noah was doing so well developmentally?
River's neurologist is adding Valium when he is ill, maybe that is something you could do for Noah?


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