Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 > , I wanted to wish you good luck with the initiation of the diet, When do you start? (i've not been checking my mail lately, so sorry if i missed that message) I know Boston children's in a great hospital, my daughter Stella spent a couple days there last year when we were on vacation in Rhode Island. We found the docs to be great, listened to her story and called Seattle immediately to talk to her doc here. Your story is so familiar to a lot of parents on here I think our children here have pretty severe seizures, Stella has spent days in a drug induced coma before, and then in PICU for days after. I do hope you find the diet to work, we are slowly noticing some improvement with Stella, but it's been a very bumpy road for her. We found the dietitians meal plans to be inaccurate, and her ratio was lower than a 3.75-1 which is where she started. I use the stanford planner now, and I call all the food companies for their non rounded nutritional analysis, I've found many discrepancies this way, and as others have told you, you really have to play detective when it comes to fine tuning. After having 100's of seizures a day, Stella is down to 6, and on good days 0. So far she's had 3 days with no seizures in the last 6 weeks. I know weaning her off the diazepam had something to do with that. That was a tough wean though, so keep that in mind when you start that process too. She had over a 100 drops a day. Are you going to wean the depakote? I'm sure you've read that it has some interferences with the diet, which all drugs do, but that is one to watch out for. I'm so happy Jake is able to run around still with his friends, I know to see Stella running now after such a long time of always carrying her is a wonderful sight to see. She is 5, so she's getting a little heavy. -mom to stella age 5, still on lamictal and diamox, just weaned diazepam. Started keto May 10th 2004, and still waiting for her miracle. Also, big sis Anisa who's almost 10, a wonderful big sis and healthy, and loving life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 > , I wanted to wish you good luck with the initiation of the diet, When do you start? (i've not been checking my mail lately, so sorry if i missed that message) I know Boston children's in a great hospital, my daughter Stella spent a couple days there last year when we were on vacation in Rhode Island. We found the docs to be great, listened to her story and called Seattle immediately to talk to her doc here. Your story is so familiar to a lot of parents on here I think our children here have pretty severe seizures, Stella has spent days in a drug induced coma before, and then in PICU for days after. I do hope you find the diet to work, we are slowly noticing some improvement with Stella, but it's been a very bumpy road for her. We found the dietitians meal plans to be inaccurate, and her ratio was lower than a 3.75-1 which is where she started. I use the stanford planner now, and I call all the food companies for their non rounded nutritional analysis, I've found many discrepancies this way, and as others have told you, you really have to play detective when it comes to fine tuning. After having 100's of seizures a day, Stella is down to 6, and on good days 0. So far she's had 3 days with no seizures in the last 6 weeks. I know weaning her off the diazepam had something to do with that. That was a tough wean though, so keep that in mind when you start that process too. She had over a 100 drops a day. Are you going to wean the depakote? I'm sure you've read that it has some interferences with the diet, which all drugs do, but that is one to watch out for. I'm so happy Jake is able to run around still with his friends, I know to see Stella running now after such a long time of always carrying her is a wonderful sight to see. She is 5, so she's getting a little heavy. -mom to stella age 5, still on lamictal and diamox, just weaned diazepam. Started keto May 10th 2004, and still waiting for her miracle. Also, big sis Anisa who's almost 10, a wonderful big sis and healthy, and loving life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 > , I wanted to wish you good luck with the initiation of the diet, When do you start? (i've not been checking my mail lately, so sorry if i missed that message) I know Boston children's in a great hospital, my daughter Stella spent a couple days there last year when we were on vacation in Rhode Island. We found the docs to be great, listened to her story and called Seattle immediately to talk to her doc here. Your story is so familiar to a lot of parents on here I think our children here have pretty severe seizures, Stella has spent days in a drug induced coma before, and then in PICU for days after. I do hope you find the diet to work, we are slowly noticing some improvement with Stella, but it's been a very bumpy road for her. We found the dietitians meal plans to be inaccurate, and her ratio was lower than a 3.75-1 which is where she started. I use the stanford planner now, and I call all the food companies for their non rounded nutritional analysis, I've found many discrepancies this way, and as others have told you, you really have to play detective when it comes to fine tuning. After having 100's of seizures a day, Stella is down to 6, and on good days 0. So far she's had 3 days with no seizures in the last 6 weeks. I know weaning her off the diazepam had something to do with that. That was a tough wean though, so keep that in mind when you start that process too. She had over a 100 drops a day. Are you going to wean the depakote? I'm sure you've read that it has some interferences with the diet, which all drugs do, but that is one to watch out for. I'm so happy Jake is able to run around still with his friends, I know to see Stella running now after such a long time of always carrying her is a wonderful sight to see. She is 5, so she's getting a little heavy. -mom to stella age 5, still on lamictal and diamox, just weaned diazepam. Started keto May 10th 2004, and still waiting for her miracle. Also, big sis Anisa who's almost 10, a wonderful big sis and healthy, and loving life. Quote Link to comment Share on other sites More sharing options...
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