Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I can see the why the acidosis worry then, but I'm not sure how the diet could help at this point if she is not actually producing any ketones? Or is it something additional with having her on a high fat/low carb diet they are trying to achieve as well? And yes, I guess in your case the diet sure has been 'forever' ----- Original Message ----- > , > Thank you for all the information. Hannah had high levels of acid at 12 hours after birth (now she gets weekly lactic acid checks) It was as high as over 300. Now she ranges around 20-25 with a very strict modified keto diet. It doesn't seem to me that the keto diet has helped her seizures, but then again, maybe her seizures would be 10 times worse without the diet. We wouldn't know because she has been on the diet " forever " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 , I' m not sure anymore. Originally, the " modified " ketogenic diet was for what was suspected to be PDH, a metabolic disease where she can't metabolize the carbohydrates. But now, they are concerned and utilizing the diet because of Hannah's seizures. The only thing is that she really isn't limited with her intake. The " recipe " makes 630cc's (approx. 22 oz) for a 24 hour period. But she is not restricted to how much she gets. They are now looking at increasing it by 10%....I don't want to starve my baby, but I worry about her seizures. Yesterday, it seemed like she had mild clonic seizures all morning. The neurologist doesn't want to increase meds though until after the muscle biopsy. We want to treat the disease not the symptoms, I guess. I really appreciate this group, and I feel like I am acquiring so much more knowledge, but as I learn more, I feel more in the dark with my own daughter. I left my job to stay home with Hannah. I used to work in child development and education. I have a dual MA in child development and child psychology, so I feel like I should " catch " everything. Of course I don't, and then I feel like a terrible mother. I guess I'm doing the best I can...oh well, I think I am beginning to ramble. Re: - calories/ratio etc I can see the why the acidosis worry then, but I'm not sure how the diet could help at this point if she is not actually producing any ketones? Or is it something additional with having her on a high fat/low carb diet they are trying to achieve as well? And yes, I guess in your case the diet sure has been 'forever' ----- Original Message ----- > , > Thank you for all the information. Hannah had high levels of acid at 12 hours after birth (now she gets weekly lactic acid checks) It was as high as over 300. Now she ranges around 20-25 with a very strict modified keto diet. It doesn't seem to me that the keto diet has helped her seizures, but then again, maybe her seizures would be 10 times worse without the diet. We wouldn't know because she has been on the diet " forever " " 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 June 3, 2004 Report Share Posted June 3, 2004 , I' m not sure anymore. Originally, the " modified " ketogenic diet was for what was suspected to be PDH, a metabolic disease where she can't metabolize the carbohydrates. But now, they are concerned and utilizing the diet because of Hannah's seizures. The only thing is that she really isn't limited with her intake. The " recipe " makes 630cc's (approx. 22 oz) for a 24 hour period. But she is not restricted to how much she gets. They are now looking at increasing it by 10%....I don't want to starve my baby, but I worry about her seizures. Yesterday, it seemed like she had mild clonic seizures all morning. The neurologist doesn't want to increase meds though until after the muscle biopsy. We want to treat the disease not the symptoms, I guess. I really appreciate this group, and I feel like I am acquiring so much more knowledge, but as I learn more, I feel more in the dark with my own daughter. I left my job to stay home with Hannah. I used to work in child development and education. I have a dual MA in child development and child psychology, so I feel like I should " catch " everything. Of course I don't, and then I feel like a terrible mother. I guess I'm doing the best I can...oh well, I think I am beginning to ramble. Re: - calories/ratio etc I can see the why the acidosis worry then, but I'm not sure how the diet could help at this point if she is not actually producing any ketones? Or is it something additional with having her on a high fat/low carb diet they are trying to achieve as well? And yes, I guess in your case the diet sure has been 'forever' ----- Original Message ----- > , > Thank you for all the information. Hannah had high levels of acid at 12 hours after birth (now she gets weekly lactic acid checks) It was as high as over 300. Now she ranges around 20-25 with a very strict modified keto diet. It doesn't seem to me that the keto diet has helped her seizures, but then again, maybe her seizures would be 10 times worse without the diet. We wouldn't know because she has been on the diet " forever " " 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 June 3, 2004 Report Share Posted June 3, 2004 , I' m not sure anymore. Originally, the " modified " ketogenic diet was for what was suspected to be PDH, a metabolic disease where she can't metabolize the carbohydrates. But now, they are concerned and utilizing the diet because of Hannah's seizures. The only thing is that she really isn't limited with her intake. The " recipe " makes 630cc's (approx. 22 oz) for a 24 hour period. But she is not restricted to how much she gets. They are now looking at increasing it by 10%....I don't want to starve my baby, but I worry about her seizures. Yesterday, it seemed like she had mild clonic seizures all morning. The neurologist doesn't want to increase meds though until after the muscle biopsy. We want to treat the disease not the symptoms, I guess. I really appreciate this group, and I feel like I am acquiring so much more knowledge, but as I learn more, I feel more in the dark with my own daughter. I left my job to stay home with Hannah. I used to work in child development and education. I have a dual MA in child development and child psychology, so I feel like I should " catch " everything. Of course I don't, and then I feel like a terrible mother. I guess I'm doing the best I can...oh well, I think I am beginning to ramble. Re: - calories/ratio etc I can see the why the acidosis worry then, but I'm not sure how the diet could help at this point if she is not actually producing any ketones? Or is it something additional with having her on a high fat/low carb diet they are trying to achieve as well? And yes, I guess in your case the diet sure has been 'forever' ----- Original Message ----- > , > Thank you for all the information. Hannah had high levels of acid at 12 hours after birth (now she gets weekly lactic acid checks) It was as high as over 300. Now she ranges around 20-25 with a very strict modified keto diet. It doesn't seem to me that the keto diet has helped her seizures, but then again, maybe her seizures would be 10 times worse without the diet. We wouldn't know because she has been on the diet " forever " " 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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