Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Calories sound a bit right, if not a little high. My son is 6 and began the diet at 18 months. He started on 750 calories and he's worked his way up to 1100 where he is today....weight is around 45-50%ile, down from 75%, and height is around 10%ile, down from 75% also (unfortunately). 4:1 ratio sounds right, I would not go higher.... Watch the weight. Watch for gaining or losing. 60% is about where he should be and he really shouldn't gain or lose for a while unless he grows in height. Are the drop seizures new? It would concern me a little if they are. Are they since you dropped the topomax? Maybe you need a small amount of med w/ the diet. Topomax and the diet are not the ideal combination, due to the issue of potential loss of appetite on that med....and the possibility of aggravating kidney stones. I would give the diet a little more time....maybe his body just needs to adjust, it is a big change....then maybe ketone levels will even out. Are you spacing fluids....he shouldn't drink more than 120cc every 1.5 hours.....that's what Hopkins always told me....and he should have no more than 1100cc per day. Fluid amount should not be more than the calories he's on. What time are his seizures? Morning - that coorelate w/ the low ketones, or spaced throughout the day? What are you using for meals/foods? Some kids are sensitive to things like aspartame, processed foods, nitrates, certain fruits, etc. Just some thoughts to throw out.... Barb Swoyer, Jake's mom ketone level > lin has been on the ketogenic diet now for 3 weeks. We started on the > Atkins diet and did that for about a month before easing into the ketogenic > diet. We have a dietician to advise us but never did the hospital stay. > lin is on 1142 calories a day which is 80% of his caloric needs (our > dietician wanted to give him more but I argued to keep that at 80% since > lin is at approx. 60% on the weight chart). We have lin on a 4:1 > ratio and I'm using the mealplanner to figure his meals. lin is now > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > mornings and 80 in the afternoons. Have tried giving him a snack in the > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the snack > has made no difference to his ketone level. How can we get his ketones > higher? I know many here have the opposite problem but we just can't seem > to get his ketones up high enough. I keep feeling like if we could get them > up to a consistent 80 that he might not have so many seizures. lin is > not on any drugs. We weaned the topomax while he was on the Atkins diet. > Tomorrow it will be 1 year since lin had his first tonic-clonic > seizure. How different our lives are now! > > Thanks! > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 lin has not gained or lost weight so far. The drop seizures have been around for a long, long time. Looking through our seizure diary for the past year and lin's drop seizures have averaged 8 to 10 a day no matter what drug he was on. The drugs have rarely effected his drop seizures but did cause horrendous side effects and depakote added huge amounts of absence seizures. So now even though lin is still having the drop seizures, he is having no drug side effects (because he isn't on any) and he feels really good on the diet! He is such a happy guy now that he is off the drugs, if we could just keep these damn drop seizures from happening! Poor little guy wears his helmet from the second he gets out of bed each morning but never complains for a second. I will take a look at his liquid intake. His seizures are usually worse in the morning than in the afternoon/evenings but yesterday was the opposite. Thanks for the ideas, we'll keep plugging away. We want to avoid going back to the drugs if at all possible! Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) ketone level > > > > lin has been on the ketogenic diet now for 3 weeks. We started on > the > > Atkins diet and did that for about a month before easing into the > ketogenic > > diet. We have a dietician to advise us but never did the hospital stay. > > lin is on 1142 calories a day which is 80% of his caloric needs (our > > dietician wanted to give him more but I argued to keep that at 80% since > > lin is at approx. 60% on the weight chart). We have lin on a > 4:1 > > ratio and I'm using the mealplanner to figure his meals. lin is now > > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > > mornings and 80 in the afternoons. Have tried giving him a snack in the > > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the > snack > > has made no difference to his ketone level. How can we get his ketones > > higher? I know many here have the opposite problem but we just can't seem > > to get his ketones up high enough. I keep feeling like if we could get > them > > up to a consistent 80 that he might not have so many seizures. lin > is > > not on any drugs. We weaned the topomax while he was on the Atkins diet. > > Tomorrow it will be 1 year since lin had his first tonic-clonic > > seizure. How different our lives are now! > > > > Thanks! > > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) > > > > > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > > > List is for parent to parent support only. > > It is important to get medical advice from a professional > keto team! > > Subscribe: ketogenic-subscribe > > Unsubscribe: ketogenic-unsubscribe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2002 Report Share Posted January 2, 2002 Mike has alot of drop seizures too. At first the diet didnt do much for them. At about 6 months into the diet I am noticing big changes in them - we went from approx 20 or so (one day we charted 60 of them ) down to approx 5-10 or lately only 1-3 a day and my neuro keeps hinting that we should give up on the diet and try other drugs! Sheesh! I think she wants total control - I am just happy that Mike can stand up for a full day without cracking his head open on the floor. When lin has drops does he fall over all stiff or crumple like a rag doll? Apparently these both mean different things altho I am not sure exactly what they mean. I plan on asking when we see the neuro on friday. Jenn Kathy Greenwood wrote: lin has not gained or lost weight so far. The drop seizures have been around for a long, long time. Looking through our seizure diary for the past year and lin's drop seizures have averaged 8 to 10 a day no matter what drug he was on. The drugs have rarely effected his drop seizures but did cause horrendous side effects and depakote added huge amounts of absence seizures. So now even though lin is still having the drop seizures, he is having no drug side effects (because he isn't on any) and he feels really good on the diet! He is such a happy guy now that he is off the drugs, if we could just keep these damn drop seizures from happening! Poor little guy wears his helmet from the second he gets out of bed each morning but never complains for a second. I will take a look at his liquid intake. His seizures are usually worse in the morning than in the afternoon/evenings but yesterday was the opposite. Thanks for the ideas, we'll keep plugging away. We want to avoid going back to the drugs if at all possible! Kathy (Mom to lin, 3 1/2 years old, idiopathic generalized epilepsy) ketone level > > > > lin has been on the ketogenic diet now for 3 weeks. We started on > the > > Atkins diet and did that for about a month before easing into the > ketogenic > > diet. We have a dietician to advise us but never did the hospital stay. > > lin is on 1142 calories a day which is 80% of his caloric needs (our > > dietician wanted to give him more but I argued to keep that at 80% since > > lin is at approx. 60% on the weight chart). We have lin on a > 4:1 > > ratio and I'm using the mealplanner to figure his meals. lin is now > > having 8 - 12 drop seizures a day. His ketone level is at 40 in the > > mornings and 80 in the afternoons. Have tried giving him a snack in the > > evening but he eats dinner at 6:30 pm and goes to bed at 8 pm and the > snack > > has made no difference to his ketone level. How can we get his ketones > > higher? I know many here have the opposite problem but we just can't seem > > to get his ketones up high enough. I keep feeling like if we could get > them > > up to a consistent 80 that he might not have so many seizures. lin > is > > not on any drugs. We weaned the topomax while he was on the Atkins diet. > > Tomorrow it will be 1 year since lin had his first tonic-clonic > > seizure. How different our lives are now! > > > > Thanks! > > Kathy (Mom to lin, 3 1/2 years old, generalized idiopathic epilepsy) > > > > > > > > > > "The Ketogenic Diet....a realistic treatment option, NOT just a last > resort!" > > > > List is for parent to parent support only. > > It is important to get medical advice from a professional > keto team! > > Subscribe: ketogenic-subscribe > > Unsubscribe: ketogenic-unsubscribe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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