Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Stacey, My daughter has been on the ketogenic diet for 6 years now. (via g- tube)Her seizures have been well controlled (no seizure meds) and she has shown slow steady progress. She is certainly more alert and responsive since beginning the diet, and has more energy. Gaby has verbal skills. She will repeat words, and has a few spontaneous words. Mostly though, Gaby sings!! She has a remarkable memory and great pitch for music. This has baffled the medical profession. He communication is still pretty poor though, despite this. Our bonus is having her happy and singing from daylight till dusk ne, mum to 9 year old Gaby with PDH, Australia- -- In Mito , Stacey Fleming <flemings@g...> wrote: > Does anyone out there with PDH deficiency talk? It's hard not knowing > if Sheldon will ever talk. > > Are you all on the ketogenic diet? Wondering if Sheldon should be > even though he's finally gaining some weight. Most of his problems > seem to be nervous system related and I wonder how much the high fat > diet would help his executive function problems. Suppose it's worth > putting a g-tube in just for the diet? > > Thanks. > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Stacey, My daughter has been on the ketogenic diet for 6 years now. (via g- tube)Her seizures have been well controlled (no seizure meds) and she has shown slow steady progress. She is certainly more alert and responsive since beginning the diet, and has more energy. Gaby has verbal skills. She will repeat words, and has a few spontaneous words. Mostly though, Gaby sings!! She has a remarkable memory and great pitch for music. This has baffled the medical profession. He communication is still pretty poor though, despite this. Our bonus is having her happy and singing from daylight till dusk ne, mum to 9 year old Gaby with PDH, Australia- -- In Mito , Stacey Fleming <flemings@g...> wrote: > Does anyone out there with PDH deficiency talk? It's hard not knowing > if Sheldon will ever talk. > > Are you all on the ketogenic diet? Wondering if Sheldon should be > even though he's finally gaining some weight. Most of his problems > seem to be nervous system related and I wonder how much the high fat > diet would help his executive function problems. Suppose it's worth > putting a g-tube in just for the diet? > > Thanks. > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Thanks. That's great that she sings. That amazes me whenever I think of Gaby. Sheldon loves music and I think it is so strange that he doesn't even hum or try to sing. If you don't mind my asking, when did she start talking? Also, have you found a mode of communication that works for her to ask for things? We are trying to teach Sheldon that he can ask people for things but it seems very hard for him. He has quite a few signs but rarely uses them to request things, only to 'talk about' things. We're trying to use PECs with him but that also seems hard for him. Stacey, My daughter has been on the ketogenic diet for 6 years now. (via g- tube)Her seizures have been well controlled (no seizure meds) and she has shown slow steady progress. She is certainly more alert and responsive since beginning the diet, and has more energy. Gaby has verbal skills. She will repeat words, and has a few spontaneous words. Mostly though, Gaby sings!! She has a remarkable memory and great pitch for music. This has baffled the medical profession. He communication is still pretty poor though, despite this. Our bonus is having her happy and singing from daylight till dusk ne, mum to 9 year old Gaby with PDH, Australia- -- In Mito , Stacey Fleming <flemings@g...> wrote: > Does anyone out there with PDH deficiency talk? It's hard not knowing > if Sheldon will ever talk. > > Are you all on the ketogenic diet? Wondering if Sheldon should be > even though he's finally gaining some weight. Most of his problems > seem to be nervous system related and I wonder how much the high fat > diet would help his executive function problems. Suppose it's worth > putting a g-tube in just for the diet? > > Thanks. > -- Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor Get unlimited calls to U.S./Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Thanks. That's great that she sings. That amazes me whenever I think of Gaby. Sheldon loves music and I think it is so strange that he doesn't even hum or try to sing. If you don't mind my asking, when did she start talking? Also, have you found a mode of communication that works for her to ask for things? We are trying to teach Sheldon that he can ask people for things but it seems very hard for him. He has quite a few signs but rarely uses them to request things, only to 'talk about' things. We're trying to use PECs with him but that also seems hard for him. Stacey, My daughter has been on the ketogenic diet for 6 years now. (via g- tube)Her seizures have been well controlled (no seizure meds) and she has shown slow steady progress. She is certainly more alert and responsive since beginning the diet, and has more energy. Gaby has verbal skills. She will repeat words, and has a few spontaneous words. Mostly though, Gaby sings!! She has a remarkable memory and great pitch for music. This has baffled the medical profession. He communication is still pretty poor though, despite this. Our bonus is having her happy and singing from daylight till dusk ne, mum to 9 year old Gaby with PDH, Australia- -- In Mito , Stacey Fleming <flemings@g...> wrote: > Does anyone out there with PDH deficiency talk? It's hard not knowing > if Sheldon will ever talk. > > Are you all on the ketogenic diet? Wondering if Sheldon should be > even though he's finally gaining some weight. Most of his problems > seem to be nervous system related and I wonder how much the high fat > diet would help his executive function problems. Suppose it's worth > putting a g-tube in just for the diet? > > Thanks. > -- Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor Get unlimited calls to U.S./Canada Quote Link to comment Share on other sites More sharing options...
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