Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Rhonda, Thank you for the information on Topamax! Our doctors never told us any of that. We had a hard time getting high ketones from when he was on the Topamax. You are right, that is why his ratio is higher. Now he seems to be producing better ketones. His weight seems to be average. I actually decreased the calories he was on earlier because he had gained 4 pounds in 1 month. The dietitian over-estimated the calories he should be at. That is when the seizures started again. Ever since, we have not been able to get control back. What do you think about the 4.5 ratio? I would love to get him back to 4.0 but am afraid to do it because of all the seizures. They seem to all be happening when he is awake and mostly in the morning before 12:00 PM. Although he still has several after that, too. I would appreciate any more suggestions. Thanks! Ann > Ann, > > Topamax messes with the metabolism. When our daughter started the diet she > was on topamax. We had to raises her calories significantly (increased them > 300-400 calories over the recommended amount) because of her increased > metabolism from Topamax. After weaning her off the Topamax her metabolism > slowed down and over time we brought her calories down to the suggested > " norm " for her height and weight. Now that you are rid of the Topamax I'm > wondering if it is the culprit for needing to be at a 4.5 ratio to get > good ketones and with it gone he is producing good ketones. Is getting > sufficient calories? Is he a very lean boy or is his weight adequate? Are > 's seizures when he is awake or asleep? Our daughter's awake seizures > did not disappear until the Topamax was gone. Just trying to brain storm > with you. > > Rhonda ( mom to Shan, age 9, keto/Atkins over 2 years) > > > Gretchen, > I hope I am doing this reply correctly. I am very new to this and > still trying to figure it all out. Thanks so much for your > questions! was on Topamax and we have gradually weaned him off > as of 2 weeks ago. We have not noticed any change in seizures yet. > Although his ketones have been much higher within the past few days. > We were having trouble getting dark purple each day. I appreciate > your advice on Cincinnati. We have not had any luck with U of Mich. > and are now trying Detroit Children's Hospital. They are looking > into his fatty acids and Carnitine now. Have you ever heard of loud > noises causing seizures? has had several after loud sounds and > we are wondering about that. > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 I'm sorry to hear went to a 4.5 ratio. My son did that for a few months, and it was tough. It wasn't just the limited food that was tough, it was also the reflux. He actually did much better when he went back to 4.0. He felt better, and the seizures diminshed. I'm not bitter about the time he spent at 4.5; we all thought that he needed it. Returning to 4.0 was a joyous occassion. It was like getting dessert. Suddenly, I felt like we could make this diet work. A few weeks later we went to 3.5. Other than the limited calories and no snacks between meals, it feels practically normal! Another nice thing about 4.5, is that my son was never hungry. Though I think hunger is a healthy sign, sending a child to bed hungry sure pulls heart strings. Back to . I would think that the rapid weight gain in one month was more a factor in his loosing seizure control than the 4.0 ratio. And if the topomax was interfering with ketone production, that would be another thing to consider. Remember, if you use the home Precision moniter, it will record lower ketones than the lab test. I think if I were you, I would lobby hard to go back to the lower ratio for awhile and see what happens. He might not need the 4.5. Good luck. Gretchen > > Ann, > > > > Topamax messes with the metabolism. When our daughter started the > diet she > > was on topamax. We had to raises her calories significantly > (increased them > > 300-400 calories over the recommended amount) because of her > increased > > metabolism from Topamax. After weaning her off the Topamax her > metabolism > > slowed down and over time we brought her calories down to the > suggested > > " norm " for her height and weight. Now that you are rid of the > Topamax I'm > > wondering if it is the culprit for needing to be at a 4.5 > ratio to get > > good ketones and with it gone he is producing good ketones. Is > getting > > sufficient calories? Is he a very lean boy or is his weight > adequate? Are > > 's seizures when he is awake or asleep? Our daughter's awake > seizures > > did not disappear until the Topamax was gone. Just trying to brain > storm > > with you. > > > > Rhonda ( mom to Shan, age 9, keto/Atkins over 2 years) > > > > > > Gretchen, > > I hope I am doing this reply correctly. I am very new to this and > > still trying to figure it all out. Thanks so much for your > > questions! was on Topamax and we have gradually weaned him off > > as of 2 weeks ago. We have not noticed any change in seizures yet. > > Although his ketones have been much higher within the past few days. > > We were having trouble getting dark purple each day. I appreciate > > your advice on Cincinnati. We have not had any luck with U of Mich. > > and are now trying Detroit Children's Hospital. They are looking > > into his fatty acids and Carnitine now. Have you ever heard of loud > > noises causing seizures? has had several after loud sounds and > > we are wondering about that. > > > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Gretchen, Thanks for your reply! It is so encouraging to hear other families are making it through all this, too. This group is already a great source of support for me. I may try to lower the ratio and see what happens. has been on 4.5 for at least a month. Unfortunately, I have not had any good advice from either of the dietians I have talked to. I guess you just have to use your best judgement sometimes. Thanks, I will keep you posted! Ann > > > Ann, > > > > > > Topamax messes with the metabolism. When our daughter started > the > > diet she > > > was on topamax. We had to raises her calories significantly > > (increased them > > > 300-400 calories over the recommended amount) because of her > > increased > > > metabolism from Topamax. After weaning her off the Topamax her > > metabolism > > > slowed down and over time we brought her calories down to the > > suggested > > > " norm " for her height and weight. Now that you are rid of the > > Topamax I'm > > > wondering if it is the culprit for needing to be at a 4.5 > > ratio to get > > > good ketones and with it gone he is producing good ketones. Is > > getting > > > sufficient calories? Is he a very lean boy or is his weight > > adequate? Are > > > 's seizures when he is awake or asleep? Our daughter's > awake > > seizures > > > did not disappear until the Topamax was gone. Just trying to > brain > > storm > > > with you. > > > > > > Rhonda ( mom to Shan, age 9, keto/Atkins over 2 years) > > > > > > > > > Gretchen, > > > I hope I am doing this reply correctly. I am very new to this > and > > > still trying to figure it all out. Thanks so much for your > > > questions! was on Topamax and we have gradually weaned him > off > > > as of 2 weeks ago. We have not noticed any change in seizures > yet. > > > Although his ketones have been much higher within the past few > days. > > > We were having trouble getting dark purple each day. I > appreciate > > > your advice on Cincinnati. We have not had any luck with U of > Mich. > > > and are now trying Detroit Children's Hospital. They are looking > > > into his fatty acids and Carnitine now. Have you ever heard of > loud > > > noises causing seizures? has had several after loud sounds > and > > > we are wondering about that. > > > > > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Gretchen, Thanks for your reply! It is so encouraging to hear other families are making it through all this, too. This group is already a great source of support for me. I may try to lower the ratio and see what happens. has been on 4.5 for at least a month. Unfortunately, I have not had any good advice from either of the dietians I have talked to. I guess you just have to use your best judgement sometimes. Thanks, I will keep you posted! Ann > > > Ann, > > > > > > Topamax messes with the metabolism. When our daughter started > the > > diet she > > > was on topamax. We had to raises her calories significantly > > (increased them > > > 300-400 calories over the recommended amount) because of her > > increased > > > metabolism from Topamax. After weaning her off the Topamax her > > metabolism > > > slowed down and over time we brought her calories down to the > > suggested > > > " norm " for her height and weight. Now that you are rid of the > > Topamax I'm > > > wondering if it is the culprit for needing to be at a 4.5 > > ratio to get > > > good ketones and with it gone he is producing good ketones. Is > > getting > > > sufficient calories? Is he a very lean boy or is his weight > > adequate? Are > > > 's seizures when he is awake or asleep? Our daughter's > awake > > seizures > > > did not disappear until the Topamax was gone. Just trying to > brain > > storm > > > with you. > > > > > > Rhonda ( mom to Shan, age 9, keto/Atkins over 2 years) > > > > > > > > > Gretchen, > > > I hope I am doing this reply correctly. I am very new to this > and > > > still trying to figure it all out. Thanks so much for your > > > questions! was on Topamax and we have gradually weaned him > off > > > as of 2 weeks ago. We have not noticed any change in seizures > yet. > > > Although his ketones have been much higher within the past few > days. > > > We were having trouble getting dark purple each day. I > appreciate > > > your advice on Cincinnati. We have not had any luck with U of > Mich. > > > and are now trying Detroit Children's Hospital. They are looking > > > into his fatty acids and Carnitine now. Have you ever heard of > loud > > > noises causing seizures? has had several after loud sounds > and > > > we are wondering about that. > > > > > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Gretchen, Thanks for your reply! It is so encouraging to hear other families are making it through all this, too. This group is already a great source of support for me. I may try to lower the ratio and see what happens. has been on 4.5 for at least a month. Unfortunately, I have not had any good advice from either of the dietians I have talked to. I guess you just have to use your best judgement sometimes. Thanks, I will keep you posted! Ann > > > Ann, > > > > > > Topamax messes with the metabolism. When our daughter started > the > > diet she > > > was on topamax. We had to raises her calories significantly > > (increased them > > > 300-400 calories over the recommended amount) because of her > > increased > > > metabolism from Topamax. After weaning her off the Topamax her > > metabolism > > > slowed down and over time we brought her calories down to the > > suggested > > > " norm " for her height and weight. Now that you are rid of the > > Topamax I'm > > > wondering if it is the culprit for needing to be at a 4.5 > > ratio to get > > > good ketones and with it gone he is producing good ketones. Is > > getting > > > sufficient calories? Is he a very lean boy or is his weight > > adequate? Are > > > 's seizures when he is awake or asleep? Our daughter's > awake > > seizures > > > did not disappear until the Topamax was gone. Just trying to > brain > > storm > > > with you. > > > > > > Rhonda ( mom to Shan, age 9, keto/Atkins over 2 years) > > > > > > > > > Gretchen, > > > I hope I am doing this reply correctly. I am very new to this > and > > > still trying to figure it all out. Thanks so much for your > > > questions! was on Topamax and we have gradually weaned him > off > > > as of 2 weeks ago. We have not noticed any change in seizures > yet. > > > Although his ketones have been much higher within the past few > days. > > > We were having trouble getting dark purple each day. I > appreciate > > > your advice on Cincinnati. We have not had any luck with U of > Mich. > > > and are now trying Detroit Children's Hospital. They are looking > > > into his fatty acids and Carnitine now. Have you ever heard of > loud > > > noises causing seizures? has had several after loud sounds > and > > > we are wondering about that. > > > > > > Ann Quote Link to comment Share on other sites More sharing options...
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