Having trouble keeping the ketones high

[Guest guest]

Hi Everyone, We have been on the diet 6 weeks and we are struggling. My daughter Kim has hard to control seizures from viral encephalitis 3 years ago. The diet seems to really help but as soon as her ketones drop to moderate we always have a seizure or seizures. We have a great neurologist and dietician. For the life of me I don't know what I am doing wrong, I am following their instructions to the absolute letter. Today, Kim had 4 seizures and I told the neurologist on the phone that this time we can not blame low ketones because they were large(160) last night. Well a few hours after I got off the phone with him I checked her ketones and they had fallen to moderate. The only thing I did different yesterday and today is give "neutra-Phos", 125 grams which they told me to add to her daily diet, the packet says "sugar free" and the pharmisict ordered it for me from the doctors perscription. We have changed her ratio a few weeks ago to 4.2to 1, and that helped for awhile and then we thought that her liquid was not evenly spaced enough and we did that and the ketones got darker and the seizures stopped. They also now calculate her meds in with her meals. They also have reduced her calories. Maybe her meals aren't spaced evenly enough, she sometimes lately has been sleeping late, but then I move the other meals back and the dietician said that was ok. He has been weaning medicine and he got Felbatol off but had to add phenobarb to do it, he is presently weaning Keppra a half of a pill a week we are now at 750mgs. a day. Kim is on phenobarb 30 mgs. twice a day (but he increased it on our last phone call a few hours ago to 30 and 60 mgs.) and she is on Keppra being weaned and Neurontin. I asked if it could be the weaning and would things get better as we got the meds off, he said yes they will but he said Kim needs to have a front line drug with the diet. Kim was hospitalized for 4 months with the viral encephalitis 3 years ago and was in status for 5 weeks in a coma. She has done well and was back in second grade but is now homebound until we get the seizures under control and the diet rolling. I really don't know if it is that the diet is not working great for us or that I am doing something that is not right . I have seen times that I am sure this diet is working for us. Kim always clusters with seizures, we can go at her best 2 to 3 weeks at times without seizures and then have 8 in a day. She has been on all the seizures meds and some work better for her than others but none of them completely controlled her seizures. I really am at a loss after the 4 seizures today. She also takes Cal-Mag-Zinc vitamins from whole life. She has seemed pale and tired to me all week and then the 4 seizures today. Any suggestions I would deeply appreciate. I do think we would have better control if he wasn't weaning some of the meds but I also want to get some of them off. I asked him about withdraw seizures when he was weaning Felbatol a few weeks ago and he did say that can happen. I think 4 in a row seemed to be alot for withdraw seizures because when he was weaning Felbatol we seemed to have only one at each increment reduction. By the way, Kim is 9 and we live in the suburbs of Philadelphia, Pa. Kim is the youngest, she has 2 older sisters , 18 and , 15. Thank-You, PamGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com