Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 We have just completed our fourth week on the diet. They just changed his ratio from 3:1 to 3.2:1 as we have noticed dips in his ketones and only temporary seizure control. He gets down to moderate somewhere near the middle of the day and some times it drops to low ketones before going back up in the evening. Has anyone else seen this to happen and what did you do other than raise ratio if anything. What would adding a meal do. Our dietician suggested this as the next step, but I don't fully understand why. We need to come down on his topamax since it is so high and we are seeing some speech delays that may be related, but we are a little frightened to come down on it since topamax was the drug to get his gran mals under control. He only has them when his fever spikes or is sick now. Before he would have them all the time. We were hoping to get a little more consistent control before dropping the topamax. I am so afraid this will never work. We have been talking to his doctors about severe myoclonic epilepsy in infants. My husband and I thought that his neurologist had clinically dismissed this as 's condition since he looked so good, but now we are seeing delays (that might just be meds but we don't know) and now the neurologists are saying that they can't rule it out until is older. He is 17 months old now and they said that age 2 1/2 would give them a better picture. It has been a bad week. I really hate this diet. We went out to eat after church today. I had packed 's lunch and everything. He ate it great, but cried as we ate and reached for our food. He always loved to eat. We rushed to finish and leave because it was tearing our hearts out and everyone was looking at our table, I am sure they were wondering what was going on. Please someone tell me this gets better. Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Tina, I admire you for braving a restaurant so early in the diet. We've been on it over two months, and I'm still to chicken to try. Maybe your first visit will be the worst one. Keep trying; because I think those family traditions are so important to keep. It sends the message to you all that life can still be lived on this diet. I say this having completely failed in this area so far. Our first regular meals at home were heart wrenching, when Ethan was still hungry and we all still had full plates. The thing that helped make it easier was when we went from a 4:1 ratio to 4.5:1 ratio, the larger ketones made Ethan loose his voracious appetite. Of course, I would never go to a higher ratio for that reason, it was just a side-effect of the higher ratio that helped a bit. So, for you having to go up from 3:1 might not be all bad. It did take Ethan a week to adjust to the higher ketones, kindof like when he started the diet. You also mentioned topomax. My son was about 8 years old when he tried topomax. We quit after twpo weeks, because word retrieval became so diffficult for him that he even forgot his own brother's name, once. HOwever, if the topomax is helping control seizures, you might want to stick with it forawhile. I don't think it is doing any long term damage to his language abilities. Kids that age have so much to take in and are so good at taking information in that they still aquire language even without showing it--you know, the kids who never say anything until they are 4 or 5 and then suddently have fluent speech. Good luck as you continue the diet. Keep those family outings going and maybe someday I will have the courage to follow your example. Gretchen > We have just completed our fourth week on the diet. They just > changed his ratio from 3:1 to 3.2:1 as we have noticed dips in his > ketones and only temporary seizure control. He gets down to moderate > somewhere near the middle of the day and some times it drops to low > ketones before going back up in the evening. Has anyone else seen > this to happen and what did you do other than raise ratio if > anything. What would adding a meal do. Our dietician suggested this > as the next step, but I don't fully understand why. We need to come > down on his topamax since it is so high and we are seeing some speech > delays that may be related, but we are a little frightened to come > down on it since topamax was the drug to get his gran mals under > control. He only has them when his fever spikes or is sick now. > Before he would have them all the time. We were hoping to get a > little more consistent control before dropping the topamax. > > I am so afraid this will never work. We have been talking to his > doctors about severe myoclonic epilepsy in infants. My husband and I > thought that his neurologist had clinically dismissed this as 's > condition since he looked so good, but now we are seeing delays (that > might just be meds but we don't know) and now the neurologists are > saying that they can't rule it out until is older. He is 17 > months old now and they said that age 2 1/2 would give them a better > picture. It has been a bad week. I really hate this diet. We went > out to eat after church today. I had packed 's lunch and > everything. He ate it great, but cried as we ate and reached for our > food. He always loved to eat. We rushed to finish and leave because > it was tearing our hearts out and everyone was looking at our table, > I am sure they were wondering what was going on. Please someone tell > me this gets better. > Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Tina, I admire you for braving a restaurant so early in the diet. We've been on it over two months, and I'm still to chicken to try. Maybe your first visit will be the worst one. Keep trying; because I think those family traditions are so important to keep. It sends the message to you all that life can still be lived on this diet. I say this having completely failed in this area so far. Our first regular meals at home were heart wrenching, when Ethan was still hungry and we all still had full plates. The thing that helped make it easier was when we went from a 4:1 ratio to 4.5:1 ratio, the larger ketones made Ethan loose his voracious appetite. Of course, I would never go to a higher ratio for that reason, it was just a side-effect of the higher ratio that helped a bit. So, for you having to go up from 3:1 might not be all bad. It did take Ethan a week to adjust to the higher ketones, kindof like when he started the diet. You also mentioned topomax. My son was about 8 years old when he tried topomax. We quit after twpo weeks, because word retrieval became so diffficult for him that he even forgot his own brother's name, once. HOwever, if the topomax is helping control seizures, you might want to stick with it forawhile. I don't think it is doing any long term damage to his language abilities. Kids that age have so much to take in and are so good at taking information in that they still aquire language even without showing it--you know, the kids who never say anything until they are 4 or 5 and then suddently have fluent speech. Good luck as you continue the diet. Keep those family outings going and maybe someday I will have the courage to follow your example. Gretchen > We have just completed our fourth week on the diet. They just > changed his ratio from 3:1 to 3.2:1 as we have noticed dips in his > ketones and only temporary seizure control. He gets down to moderate > somewhere near the middle of the day and some times it drops to low > ketones before going back up in the evening. Has anyone else seen > this to happen and what did you do other than raise ratio if > anything. What would adding a meal do. Our dietician suggested this > as the next step, but I don't fully understand why. We need to come > down on his topamax since it is so high and we are seeing some speech > delays that may be related, but we are a little frightened to come > down on it since topamax was the drug to get his gran mals under > control. He only has them when his fever spikes or is sick now. > Before he would have them all the time. We were hoping to get a > little more consistent control before dropping the topamax. > > I am so afraid this will never work. We have been talking to his > doctors about severe myoclonic epilepsy in infants. My husband and I > thought that his neurologist had clinically dismissed this as 's > condition since he looked so good, but now we are seeing delays (that > might just be meds but we don't know) and now the neurologists are > saying that they can't rule it out until is older. He is 17 > months old now and they said that age 2 1/2 would give them a better > picture. It has been a bad week. I really hate this diet. We went > out to eat after church today. I had packed 's lunch and > everything. He ate it great, but cried as we ate and reached for our > food. He always loved to eat. We rushed to finish and leave because > it was tearing our hearts out and everyone was looking at our table, > I am sure they were wondering what was going on. Please someone tell > me this gets better. > Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Tina, I admire you for braving a restaurant so early in the diet. We've been on it over two months, and I'm still to chicken to try. Maybe your first visit will be the worst one. Keep trying; because I think those family traditions are so important to keep. It sends the message to you all that life can still be lived on this diet. I say this having completely failed in this area so far. Our first regular meals at home were heart wrenching, when Ethan was still hungry and we all still had full plates. The thing that helped make it easier was when we went from a 4:1 ratio to 4.5:1 ratio, the larger ketones made Ethan loose his voracious appetite. Of course, I would never go to a higher ratio for that reason, it was just a side-effect of the higher ratio that helped a bit. So, for you having to go up from 3:1 might not be all bad. It did take Ethan a week to adjust to the higher ketones, kindof like when he started the diet. You also mentioned topomax. My son was about 8 years old when he tried topomax. We quit after twpo weeks, because word retrieval became so diffficult for him that he even forgot his own brother's name, once. HOwever, if the topomax is helping control seizures, you might want to stick with it forawhile. I don't think it is doing any long term damage to his language abilities. Kids that age have so much to take in and are so good at taking information in that they still aquire language even without showing it--you know, the kids who never say anything until they are 4 or 5 and then suddently have fluent speech. Good luck as you continue the diet. Keep those family outings going and maybe someday I will have the courage to follow your example. Gretchen > We have just completed our fourth week on the diet. They just > changed his ratio from 3:1 to 3.2:1 as we have noticed dips in his > ketones and only temporary seizure control. He gets down to moderate > somewhere near the middle of the day and some times it drops to low > ketones before going back up in the evening. Has anyone else seen > this to happen and what did you do other than raise ratio if > anything. What would adding a meal do. Our dietician suggested this > as the next step, but I don't fully understand why. We need to come > down on his topamax since it is so high and we are seeing some speech > delays that may be related, but we are a little frightened to come > down on it since topamax was the drug to get his gran mals under > control. He only has them when his fever spikes or is sick now. > Before he would have them all the time. We were hoping to get a > little more consistent control before dropping the topamax. > > I am so afraid this will never work. We have been talking to his > doctors about severe myoclonic epilepsy in infants. My husband and I > thought that his neurologist had clinically dismissed this as 's > condition since he looked so good, but now we are seeing delays (that > might just be meds but we don't know) and now the neurologists are > saying that they can't rule it out until is older. He is 17 > months old now and they said that age 2 1/2 would give them a better > picture. It has been a bad week. I really hate this diet. We went > out to eat after church today. I had packed 's lunch and > everything. He ate it great, but cried as we ate and reached for our > food. He always loved to eat. We rushed to finish and leave because > it was tearing our hearts out and everyone was looking at our table, > I am sure they were wondering what was going on. Please someone tell > me this gets better. > Tina Quote Link to comment Share on other sites More sharing options...
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