Tuesday, October 21, 2008
Things have pretty much stayed the same lately. Lauren's doctor wants us to continue the klonopin and to keep adding the MCT oil slowly. She has had 2 grandmal seizures (both at 6:30am) since we have been home almost 3 weeks now. Her ketones continue to rise as we add the MCT oil. I hope this helps her keep high enough ketones to make it overnight.
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3 comments:
I'm glad things haven't gotten worse. Hang in there...we're still praying for Lauren and her family many, many times a day! Give her a big hug from us! Take one for yourself also! Kim
My 5yo son has had intractable epilepsy for almost 2 years now. He's on the keto diet as well. I know how much of a trial this is on a child and a family. I will pray for you and your family. In case you want to review our blog, it's at ncmckinleys.blogspot.com. May God pour out His grace on your and your daughter. -Reid
My husband passed your blog on to me. We are from NC. We also did the diet with Johns Hopkins (have been on it for 14 months). We currently have our son at Cleveland Clinic, and we are getting some good information here. You mentioned her carnitine levels being low, but not knowing whether or not that was diet-related. I spoke with the geneticist here today, and from he has told me, blood levels can be affected, but spinal fluid via lumbar puncture)is not. We have been all over to various hospitals and this is the first place we have been that is performing a complete and thorough genetic and metabloic workup. You may have already done this already, but I wanted to mention it just in case. We will be praying for Lauren and for you as well.
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