Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Dear Satnam I feel your disappointment. This diet is such a hope for all of us. It seems like the little ones on the diet seem to have trouble keeping the ketones up. Maybe it will be an option when she is older. For , I saw a recognizable cognitive change. Not that she is on target developmentally now, but she is moving ahead. For me this was such a positive. I had seen her stay pretty much at the same level for the whole 2.5 years that she had been seizuring. Now she is moving ahead. It is not dramatic, but there is movement. Has the diet given Kristan any edge in that direction, or had the seizuring not affected her cognition? If you do wean her, don't give up on keto for later. It just may be she is young for it. Every child is different. Blessings... , 's mumma kristansmommy skkahalma@...> wrote: Hi , Kristan's seizures are up and down, she had 28 yesterday, five today and other days can be anywhere from 6 to 14. Kristan has been on lower ratios, we've done many ratio changes and nothing ups her ketones. I don't think she is getting too much water, I am sticking with just giving her 100 ml of water in the am and 100 ml of water in the pm and the rest of her fluid intake is from her formula. I only test ketones twice a day now as per her dietitian, once the am and once the pm. We use to do it four times a day and the ketones were always in the low to moderate range. Now they are mostly in the moderate range and sometimes in the lower end of the large range. At one point I thought she was one of those kids that did well on low ketones, but now that's not the case since her seizures picked up again back at the end of June. This group has provided me with lots of information to help with the fine tuning, but I think we have come to the realization that this diet just may not work for Kristan. I've looked in the archives and have everything printed and go over it all the time. I use the ketostix to check her ketones, the one where after 15 seconds you know which range they are at. We have basically decided to start weaning her from the diet, it's just a matter of when do we do it, maybe as we wean and she stays on the same calories that will be the answer, I wanted to commit to a year and we do believe we have tried everything we can with this diet, we want to try a naturopath next and we have not written off the keto diet forever, we may put her back on it when she is older, hopefully we won't have to, but we will try again if required. I really appreciate your suggestions and help. Satnam > > Hi everyone. My little Kristan in the last few days has very > little > > interest in taking the bottle or a solid meal. She is quite > content > > just sitting and blowing bubbles, she's very vocal and sounds > happy. > > I have to wait until she gets sleepy to get a bottle in her! When > > she sees the bottle coming towards her she just turns her head, > > doesn't want it. When I try a solid meal with her, b/c she just > > wants to blow bubbles it all drools out. I can't win with this > kid! > > She has just cut two molars, is that why she has no appetite? Or > > could the 4.5:1 ratio be suppressing her appetite? She's on 735 > > kcal/day. She isn't crying, like I said earlier, she's quite > content > > doing her own thing. > > > > Any thoughts? > > > > Satnam, mom to Kristan, 21 months today > > Keto kid since August 2003 > > > > > > > > " 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 August 31, 2004 Report Share Posted August 31, 2004 Hi , it's really hard to know if the gains that Kristan has made is b/c of the diet or b/c she is off the drugs. She came off the drugs just before we commenced the diet and the week that she was " drug free " we did notice she was more alert. The seizuring has definitely affected her cognitive abilities but we think it was more from the drugs. Satnam > > > Hi everyone. My little Kristan in the last few days has very > > little > > > interest in taking the bottle or a solid meal. She is quite > > content > > > just sitting and blowing bubbles, she's very vocal and sounds > > happy. > > > I have to wait until she gets sleepy to get a bottle in her! > When > > > she sees the bottle coming towards her she just turns her head, > > > doesn't want it. When I try a solid meal with her, b/c she just > > > wants to blow bubbles it all drools out. I can't win with this > > kid! > > > She has just cut two molars, is that why she has no appetite? Or > > > could the 4.5:1 ratio be suppressing her appetite? She's on 735 > > > kcal/day. She isn't crying, like I said earlier, she's quite > > content > > > doing her own thing. > > > > > > Any thoughts? > > > > > > Satnam, mom to Kristan, 21 months today > > > Keto kid since August 2003 > > > > > > > > > > > > " 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 August 31, 2004 Report Share Posted August 31, 2004 Yes, went right downhill with the drugs, too. It was SO SAD to watch. But the seizuring was terrifying, too. I think must have had, after the drug wean no visible seizuring, what they call " subclinical " seizures, because she just stood still developmentally. At 2.5 she could count to 20 and at 5 she could count to 20, if you know what I mean. You know your baby better than anyone but God. You will do the right thing for her, of this I am sure. You gave it your best shot. You gave it a chance. Blessings to you and Kristan.. & kristansmommy skkahalma@...> wrote: Hi , it's really hard to know if the gains that Kristan has made is b/c of the diet or b/c she is off the drugs. She came off the drugs just before we commenced the diet and the week that she was " drug free " we did notice she was more alert. The seizuring has definitely affected her cognitive abilities but we think it was more from the drugs. Satnam > > > Hi everyone. My little Kristan in the last few days has very > > little > > > interest in taking the bottle or a solid meal. She is quite > > content > > > just sitting and blowing bubbles, she's very vocal and sounds > > happy. > > > I have to wait until she gets sleepy to get a bottle in her! > When > > > she sees the bottle coming towards her she just turns her head, > > > doesn't want it. When I try a solid meal with her, b/c she just > > > wants to blow bubbles it all drools out. I can't win with this > > kid! > > > She has just cut two molars, is that why she has no appetite? Or > > > could the 4.5:1 ratio be suppressing her appetite? She's on 735 > > > kcal/day. She isn't crying, like I said earlier, she's quite > > content > > > doing her own thing. > > > > > > Any thoughts? > > > > > > Satnam, mom to Kristan, 21 months today > > > Keto kid since August 2003 > > > > > > > > > > > > " 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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