Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Barbar Have you managed to eliminate meds whilst on the diet? If not, it may be worth perservering a bit longer. My daughter is now 18 and has been on the diet for nearly 3 years. It took 2 1/2 years to get rid of the Lamictal she had been on for years before starting the diet. Her seizures then reduced and now she hasn't had a seizure for over 3 months. Jill At 09:34 AM 2/09/2004, you wrote: >Hi, >My daughter has been on the diet for 1.5 years. She is 11 and we >are starting to wean. The diet was mildly successful for us, but >not enough to endure the stress on the family and my child. >Any suggestions for weaning, >Any new ideas or treatments out there for kids who don't respond to >anything? >I have an appointment at the D'amoto Institute in Portsmouth NH. >Has anyone been there? > >Would love some feedback or moral support right about now. > >Barbar, mom of Leah (11 years), absence seizures >Boston, MA > > > > > " 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 September 2, 2004 Report Share Posted September 2, 2004 There is the VNS or surgery if she is a candidate for it. My son also had mild success with the diet and less so with AEds. Though at the moment he's on Keppra. We are awaiting the VNS. The surgeon who's going to do the VNS wasn't very encouraging about positive results from it. He may have been trying not to get our hopes up too much but we've got to try! Saro.........Rohan's mum megustotu wrote: >Hi, >My daughter has been on the diet for 1.5 years. She is 11 and we >are starting to wean. The diet was mildly successful for us, but >not enough to endure the stress on the family and my child. >Any suggestions for weaning, >Any new ideas or treatments out there for kids who don't respond to >anything? >I have an appointment at the D'amoto Institute in Portsmouth NH. >Has anyone been there? > >Would love some feedback or moral support right about now. > >Barbar, mom of Leah (11 years), absence seizures >Boston, MA > > > > > " 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 September 2, 2004 Report Share Posted September 2, 2004 Barbara, My daughter Stella has only been on the diet since May of this year, with not much success to speak of, we are going to continue to the 6month mark and then decide what to do. We just had our neuro surgery consult yesterday w/ the surgeon who will perform her vns. Stella is not a surgery candidate unless she has the corpus collos... (not sure how to spell it) which is NOT an option for us to consider, way too may problems have been shared by other parents. We know VNS is not a cure, but it may be able to reduce some of her seizures and give her some sort of an aura to let her know one is coming. ITs worth looking into. Last weekend I was a camp counselor at an epilepsy camp here in WA state, and atleast 2 dozen kids had the VNS, some older than stella, but after talking to them they were happy they had it done. I think it also helps with mood somewhat I know there is some new info re: depression and the positive outcome with VNS. The younger children didn't really know what it was, but the older kids could describe to me exactly how it felt when it was triggered, and what the sensation was like if a seizure was coming, all very interesting. I wish you all the best for your child. My mom is in England, and there is some talk of magnet therapy over there, not sure what that is though. amanda -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2004 Report Share Posted September 3, 2004 Barbar, There is very little in Dr. Freeman's book for those of us who have partial success on the diet. Similarly, there was the report last year on Charlie and his difficulties on coming off the diet. One to two years would appear to be reasonable if you chose to discontinue the diet, but want to retain as much of the benefits as possible. We chose to come down gradually, going from 4:1 to 3.5:1 to 3:1 to 2.5:1 to 2:1 to 1.5:1 to 1:1 to 0.66:1 to 0.5:1 to 0.3:1 We kept weighing our child each week and found that we had to decrease calories at the lower ratios. Some times if there were rough spots we increased ratio until things stabilized. We kept things constant for at least 2 or 3 weeks and more commonly 2 to 3 months. Dr. Freeman's book says that seizure control may be lost when coming off the diet and medications may be needed. Good luck, Bill megustotu wrote: > Hi, > My daughter has been on the diet for 1.5 years. She is 11 and we > are starting to wean. The diet was mildly successful for us, but > not enough to endure the stress on the family and my child. > Any suggestions for weaning, > Any new ideas or treatments out there for kids who don't respond to > anything? > I have an appointment at the D'amoto Institute in Portsmouth NH. > Has anyone been there? > > Would love some feedback or moral support right about now. > > Barbar, mom of Leah (11 years), absence seizures > Boston, MA > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 --Hi, -Thanks for your reply. Was she seizure free while on the diet and the meds and then you came off the meds. Or did you start reducing the meds even though she was not seizure free. Any bit of positive info at this point might make me reconsider. barbara In ketogenic , Jill wrote: > Barbar > Have you managed to eliminate meds whilst on the diet? If not, it may be > worth perservering a bit longer. My daughter is now 18 and has been on the > diet for nearly 3 years. It took 2 1/2 years to get rid of the Lamictal > she had been on for years before starting the diet. Her seizures then > reduced and now she hasn't had a seizure for over 3 months. > Jill > > At 09:34 AM 2/09/2004, you wrote: > >Hi, > >My daughter has been on the diet for 1.5 years. She is 11 and we > >are starting to wean. The diet was mildly successful for us, but > >not enough to endure the stress on the family and my child. > >Any suggestions for weaning, > >Any new ideas or treatments out there for kids who don't respond to > >anything? > >I have an appointment at the D'amoto Institute in Portsmouth NH. > >Has anyone been there? > > > >Would love some feedback or moral support right about now. > > > >Barbar, mom of Leah (11 years), absence seizures > >Boston, MA > > > > > > > > > > " 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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