Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Saro, Hello and thanks for checking on us! Langan is, thankfully, doing very well. She is eating a regular diet and is only on a small amount of trileptal (150 mg per day) that supposedly is not enough to do anything but works just fine for us. I have not been doing anything else, other than continuing to treat the acidosis with bicitra. It does appear that the acidosis was a preexisting condition and that it had a major impact on seizures. We are still seeing the occasional seizure but they are much less frequent than they ever were on meds or on the diet, which is why we think that treating the acidosis has been the key. I am careful with foods and try to stay away from the complex carbs and refined sugars, but not completely. Langan's therapists (with my reluctant blessing) motivate her with m&ms and reeses pieces. It works wonders, and she only gets them in limited quantities during therapy so I can live with that. She gets juice, but only at breakfast, and she drinks watered down crystal light and sugar free koolaid the rest of the day, so the majority of her fluid intake is water. How is Rohan? How long do you have to wait for the vns? Are you still on keto? I was wondering how you were- haven't seen you post lately. Hugs to Rohan. Keep me posted! , mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned due to severe metabolic acidosis but keto kid at heart forever. > Hi , > I'm so glad to see that Langan's bicarbs are normal and > that she is taking great steps developementally (sp). > I haven't been following the list closely so don't know > what else you've done apart from weaning the diet? > Is Langan only on Tripetal now? > Rohan is waiting for the VNS still. That sort of thing > takes ever so long in the UK. > Hugs to Langan > Saro....Rohan's mum Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 , Thanks for the update. I am so happy for you guys that the main problem being acidosis, was identified. I once borrowed a book from the library about acididity/alkalinity by a Dr.Rudolf -------?? can't remember the rest. It had a list of acid inducing foods and also the opposite. If you are interested I'd try to find out what the book was. I was interested because I thought with Rohan, the sz had more to do with the acid/alkaline issue than ketones but couldn't get any of the dr.s etc interested. Whenever Rohan's urine was alkaline he had a bad day but I don't know how it relates to the blood acidity/alkalinty. The Keppra is working reasonbaly OK considering most AEDs didn't work at all. He's off the diet and practically eats anything he likes, but has sz every 3 days or so. The inbetween days are OK where as before he had many absence/freezing type sz. Hoping the VNS (when we finally get it!) will improve things. Hugs to Langan Saro langansmom wrote: >Saro, > >Hello and thanks for checking on us! Langan is, thankfully, doing >very well. She is eating a regular diet and is only on a small >amount of trileptal (150 mg per day) that supposedly is not enough to >do anything but works just fine for us. I have not been doing >anything else, other than continuing to treat the acidosis with >bicitra. It does appear that the acidosis was a preexisting >condition and that it had a major impact on seizures. We are still >seeing the occasional seizure but they are much less frequent than >they ever were on meds or on the diet, which is why we think that >treating the acidosis has been the key. I am careful with foods and >try to stay away from the complex carbs and refined sugars, but not >completely. Langan's therapists (with my reluctant blessing) >motivate her with m&ms and reeses pieces. It works wonders, and she >only gets them in limited quantities during therapy so I can live >with that. She gets juice, but only at breakfast, and she drinks >watered down crystal light and sugar free koolaid the rest of the >day, so the majority of her fluid intake is water. > >How is Rohan? How long do you have to wait for the vns? Are you >still on keto? I was wondering how you were- haven't seen you post >lately. > >Hugs to Rohan. Keep me posted! > >, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned >due to severe metabolic acidosis but keto kid at heart forever. > > > > >>Hi , >>I'm so glad to see that Langan's bicarbs are normal and >>that she is taking great steps developementally (sp). >>I haven't been following the list closely so don't know >>what else you've done apart from weaning the diet? >>Is Langan only on Tripetal now? >>Rohan is waiting for the VNS still. That sort of thing >>takes ever so long in the UK. >>Hugs to Langan >>Saro....Rohan's mum >> >> > > > > > > > " 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 October 9, 2004 Report Share Posted October 9, 2004 , Thanks for the update. I am so happy for you guys that the main problem being acidosis, was identified. I once borrowed a book from the library about acididity/alkalinity by a Dr.Rudolf -------?? can't remember the rest. It had a list of acid inducing foods and also the opposite. If you are interested I'd try to find out what the book was. I was interested because I thought with Rohan, the sz had more to do with the acid/alkaline issue than ketones but couldn't get any of the dr.s etc interested. Whenever Rohan's urine was alkaline he had a bad day but I don't know how it relates to the blood acidity/alkalinty. The Keppra is working reasonbaly OK considering most AEDs didn't work at all. He's off the diet and practically eats anything he likes, but has sz every 3 days or so. The inbetween days are OK where as before he had many absence/freezing type sz. Hoping the VNS (when we finally get it!) will improve things. Hugs to Langan Saro langansmom wrote: >Saro, > >Hello and thanks for checking on us! Langan is, thankfully, doing >very well. She is eating a regular diet and is only on a small >amount of trileptal (150 mg per day) that supposedly is not enough to >do anything but works just fine for us. I have not been doing >anything else, other than continuing to treat the acidosis with >bicitra. It does appear that the acidosis was a preexisting >condition and that it had a major impact on seizures. We are still >seeing the occasional seizure but they are much less frequent than >they ever were on meds or on the diet, which is why we think that >treating the acidosis has been the key. I am careful with foods and >try to stay away from the complex carbs and refined sugars, but not >completely. Langan's therapists (with my reluctant blessing) >motivate her with m&ms and reeses pieces. It works wonders, and she >only gets them in limited quantities during therapy so I can live >with that. She gets juice, but only at breakfast, and she drinks >watered down crystal light and sugar free koolaid the rest of the >day, so the majority of her fluid intake is water. > >How is Rohan? How long do you have to wait for the vns? Are you >still on keto? I was wondering how you were- haven't seen you post >lately. > >Hugs to Rohan. Keep me posted! > >, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned >due to severe metabolic acidosis but keto kid at heart forever. > > > > >>Hi , >>I'm so glad to see that Langan's bicarbs are normal and >>that she is taking great steps developementally (sp). >>I haven't been following the list closely so don't know >>what else you've done apart from weaning the diet? >>Is Langan only on Tripetal now? >>Rohan is waiting for the VNS still. That sort of thing >>takes ever so long in the UK. >>Hugs to Langan >>Saro....Rohan's mum >> >> > > > > > > > " 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 October 9, 2004 Report Share Posted October 9, 2004 , Thanks for the update. I am so happy for you guys that the main problem being acidosis, was identified. I once borrowed a book from the library about acididity/alkalinity by a Dr.Rudolf -------?? can't remember the rest. It had a list of acid inducing foods and also the opposite. If you are interested I'd try to find out what the book was. I was interested because I thought with Rohan, the sz had more to do with the acid/alkaline issue than ketones but couldn't get any of the dr.s etc interested. Whenever Rohan's urine was alkaline he had a bad day but I don't know how it relates to the blood acidity/alkalinty. The Keppra is working reasonbaly OK considering most AEDs didn't work at all. He's off the diet and practically eats anything he likes, but has sz every 3 days or so. The inbetween days are OK where as before he had many absence/freezing type sz. Hoping the VNS (when we finally get it!) will improve things. Hugs to Langan Saro langansmom wrote: >Saro, > >Hello and thanks for checking on us! Langan is, thankfully, doing >very well. She is eating a regular diet and is only on a small >amount of trileptal (150 mg per day) that supposedly is not enough to >do anything but works just fine for us. I have not been doing >anything else, other than continuing to treat the acidosis with >bicitra. It does appear that the acidosis was a preexisting >condition and that it had a major impact on seizures. We are still >seeing the occasional seizure but they are much less frequent than >they ever were on meds or on the diet, which is why we think that >treating the acidosis has been the key. I am careful with foods and >try to stay away from the complex carbs and refined sugars, but not >completely. Langan's therapists (with my reluctant blessing) >motivate her with m&ms and reeses pieces. It works wonders, and she >only gets them in limited quantities during therapy so I can live >with that. She gets juice, but only at breakfast, and she drinks >watered down crystal light and sugar free koolaid the rest of the >day, so the majority of her fluid intake is water. > >How is Rohan? How long do you have to wait for the vns? Are you >still on keto? I was wondering how you were- haven't seen you post >lately. > >Hugs to Rohan. Keep me posted! > >, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned >due to severe metabolic acidosis but keto kid at heart forever. > > > > >>Hi , >>I'm so glad to see that Langan's bicarbs are normal and >>that she is taking great steps developementally (sp). >>I haven't been following the list closely so don't know >>what else you've done apart from weaning the diet? >>Is Langan only on Tripetal now? >>Rohan is waiting for the VNS still. That sort of thing >>takes ever so long in the UK. >>Hugs to Langan >>Saro....Rohan's mum >> >> > > > > > > > " 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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