Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Diane, this diet is extremely difficult as you have probly already found out; although I highly recommend it if the meds are not working. With Stella we were running out of hope, the VNS which may decrease seizures but not rid her of them, a corpus collosodomy, (spelling is wrong I think) which we were not open to at all, and being the health conscious parent I am I wanted to try the natural approach. It has not been an easy journey, with vomiting, terrible constipation, refusal of food, lethagy, acidosis, increased seizures to deal with there have been many times I wanted to give up, but then after reading so many wonderful stories of hope and determined parents on this group I'm sticking it out, and Stella has had 5 wonderful days with no seizures. She started kindergarden today and the teachers were all so on edge waiting for the 1st of many seizures and she didn't have one. It's amazing when everything just works!!! Being creative with food, serving it in interesting ways, buying pretty food dishes etc have all been suggestions which I've done w/ stella. The food is tiny so you need to get over the initial shock of that, but it definitly worth it. Good luck, I hope you do try it and I hope it brings your son some relief. Oh by the way, we were able to wean Stella off of the daily valium she was on and that is such a huge step in the right direction so that makes me keep trying, we have 2 more meds to wean. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. read her story at: http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Diane, this diet is extremely difficult as you have probly already found out; although I highly recommend it if the meds are not working. With Stella we were running out of hope, the VNS which may decrease seizures but not rid her of them, a corpus collosodomy, (spelling is wrong I think) which we were not open to at all, and being the health conscious parent I am I wanted to try the natural approach. It has not been an easy journey, with vomiting, terrible constipation, refusal of food, lethagy, acidosis, increased seizures to deal with there have been many times I wanted to give up, but then after reading so many wonderful stories of hope and determined parents on this group I'm sticking it out, and Stella has had 5 wonderful days with no seizures. She started kindergarden today and the teachers were all so on edge waiting for the 1st of many seizures and she didn't have one. It's amazing when everything just works!!! Being creative with food, serving it in interesting ways, buying pretty food dishes etc have all been suggestions which I've done w/ stella. The food is tiny so you need to get over the initial shock of that, but it definitly worth it. Good luck, I hope you do try it and I hope it brings your son some relief. Oh by the way, we were able to wean Stella off of the daily valium she was on and that is such a huge step in the right direction so that makes me keep trying, we have 2 more meds to wean. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. read her story at: http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Diane, this diet is extremely difficult as you have probly already found out; although I highly recommend it if the meds are not working. With Stella we were running out of hope, the VNS which may decrease seizures but not rid her of them, a corpus collosodomy, (spelling is wrong I think) which we were not open to at all, and being the health conscious parent I am I wanted to try the natural approach. It has not been an easy journey, with vomiting, terrible constipation, refusal of food, lethagy, acidosis, increased seizures to deal with there have been many times I wanted to give up, but then after reading so many wonderful stories of hope and determined parents on this group I'm sticking it out, and Stella has had 5 wonderful days with no seizures. She started kindergarden today and the teachers were all so on edge waiting for the 1st of many seizures and she didn't have one. It's amazing when everything just works!!! Being creative with food, serving it in interesting ways, buying pretty food dishes etc have all been suggestions which I've done w/ stella. The food is tiny so you need to get over the initial shock of that, but it definitly worth it. Good luck, I hope you do try it and I hope it brings your son some relief. Oh by the way, we were able to wean Stella off of the daily valium she was on and that is such a huge step in the right direction so that makes me keep trying, we have 2 more meds to wean. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. read her story at: http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Diane, You could try it for a few months. If it makes all of his seizures go away and gets him off the medicines it would be worth it, wouldn't it. Hallie SUGGESTIONS! I'm still looking for some help in deciding if keto is the way to go for n. I've been in the site for about a week and noticed that it seems that most of the kids have many more seizures than n. He has had a history of seizures since he was born (preemie with a brain bleed.) They were under control until 8 months of age he developed infantile spasms. Since that he had been having seizures off and on until March 2004 he started having them every 7 to 10 days which for me is bad but after reading some of these messages these poor kids are having them a number of times daily. I guess what is concering me is that I was the one who asked my doctor about the diet and he agreed with me. What are your thoughts as parents and caregivers. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Go for it, you will never ever know unless/until you try. And it will always leave you with that nagging doubt. goes months without seizures, but around 3 times a year she has clusters that last from 7-10 days. Her clusters were so severe that she was always hospitalized every time. The diet was well well worth it and I beleive you too will think its worth it, if it works. And if it doesn't, nobody seems to regret trying it, at least they know they gave it their best shot. Its hard and scary to make the initial decision. Its also hard and scary when you first start. But then you look back and wonder why you were so freaked , 's mom s38992002 wrote: > I'm still looking for some help in deciding if keto is the way to go > for n. I've been in the site for about a week and noticed > that it seems that most of the kids have many more seizures than > n. He has had a history of seizures since he was born > (preemie with a brain bleed.) They were under control until 8 > months of age he developed infantile spasms. Since that he had been > having seizures off and on until March 2004 he started having them > every 7 to 10 days which for me is bad but after reading some of > these messages these poor kids are having them a number of times > daily. I guess what is concering me is that I was the one who asked > my doctor about the diet and he agreed with me. What are your > thoughts as parents and caregivers. > > Diane > > > > " 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 September 9, 2004 Report Share Posted September 9, 2004 Go for it, you will never ever know unless/until you try. And it will always leave you with that nagging doubt. goes months without seizures, but around 3 times a year she has clusters that last from 7-10 days. Her clusters were so severe that she was always hospitalized every time. The diet was well well worth it and I beleive you too will think its worth it, if it works. And if it doesn't, nobody seems to regret trying it, at least they know they gave it their best shot. Its hard and scary to make the initial decision. Its also hard and scary when you first start. But then you look back and wonder why you were so freaked , 's mom s38992002 wrote: > I'm still looking for some help in deciding if keto is the way to go > for n. I've been in the site for about a week and noticed > that it seems that most of the kids have many more seizures than > n. He has had a history of seizures since he was born > (preemie with a brain bleed.) They were under control until 8 > months of age he developed infantile spasms. Since that he had been > having seizures off and on until March 2004 he started having them > every 7 to 10 days which for me is bad but after reading some of > these messages these poor kids are having them a number of times > daily. I guess what is concering me is that I was the one who asked > my doctor about the diet and he agreed with me. What are your > thoughts as parents and caregivers. > > Diane > > > > " 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 September 9, 2004 Report Share Posted September 9, 2004 Firstly, the diet is a big committment, and you need to be sure you want to do it before you start, or you will never give it your best... and will never know if it works. My daughter is not nearly as bad, off drugs, as many of the dear children parented by folks on this list. However, keto is her only chance at being seizure free, aside from a miracle - which I would gladly receive for her in a minute! Often children even with few seizures a month become seizure free and after a time are able to maintain freedom from seizures the rest of their lives. This is a big benefit of the diet. And, that is what we are all hoping for! Unfortunately, the diet always seems like the last ditch effort, when the drugs aren't working. In the future it may be one of the first things tried to gain seizure control. My daughter's seizures escalated with drugs. Because she had not been on drugs for a while and because she does not necessarily seizure even weekly, I was uncertain the diet worked for her for a while. However, almost like clockwork, she had one really bad week in every four weeks. We are not having those any more. A side effect that many attest to that makes it a special blessing is that often the cognitive skills/ alertness levels of the children go up. This is a quality of life issue. For my daughter, at age five and developmentally delayed, this was evident. Perhaps there were " subclinical " seizures happening that I was unaware of??? Whatever, she is now moving ahead developmentally, as well as not having the bad week every month of seizures. Personally, I hated giving my daughter drugs and watching her suffer not only the increased seizures but their side effects. Feeding her a high fat diet is much easier... and there is hope with the diet. My two cents... , mumma to dear s38992002 s38992002@...> wrote: I'm still looking for some help in deciding if keto is the way to go for n. I've been in the site for about a week and noticed that it seems that most of the kids have many more seizures than n. He has had a history of seizures since he was born (preemie with a brain bleed.) They were under control until 8 months of age he developed infantile spasms. Since that he had been having seizures off and on until March 2004 he started having them every 7 to 10 days which for me is bad but after reading some of these messages these poor kids are having them a number of times daily. I guess what is concering me is that I was the one who asked my doctor about the diet and he agreed with me. What are your thoughts as parents and caregivers. Diane " 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 September 9, 2004 Report Share Posted September 9, 2004 Firstly, the diet is a big committment, and you need to be sure you want to do it before you start, or you will never give it your best... and will never know if it works. My daughter is not nearly as bad, off drugs, as many of the dear children parented by folks on this list. However, keto is her only chance at being seizure free, aside from a miracle - which I would gladly receive for her in a minute! Often children even with few seizures a month become seizure free and after a time are able to maintain freedom from seizures the rest of their lives. This is a big benefit of the diet. And, that is what we are all hoping for! Unfortunately, the diet always seems like the last ditch effort, when the drugs aren't working. In the future it may be one of the first things tried to gain seizure control. My daughter's seizures escalated with drugs. Because she had not been on drugs for a while and because she does not necessarily seizure even weekly, I was uncertain the diet worked for her for a while. However, almost like clockwork, she had one really bad week in every four weeks. We are not having those any more. A side effect that many attest to that makes it a special blessing is that often the cognitive skills/ alertness levels of the children go up. This is a quality of life issue. For my daughter, at age five and developmentally delayed, this was evident. Perhaps there were " subclinical " seizures happening that I was unaware of??? Whatever, she is now moving ahead developmentally, as well as not having the bad week every month of seizures. Personally, I hated giving my daughter drugs and watching her suffer not only the increased seizures but their side effects. Feeding her a high fat diet is much easier... and there is hope with the diet. My two cents... , mumma to dear s38992002 s38992002@...> wrote: I'm still looking for some help in deciding if keto is the way to go for n. I've been in the site for about a week and noticed that it seems that most of the kids have many more seizures than n. He has had a history of seizures since he was born (preemie with a brain bleed.) They were under control until 8 months of age he developed infantile spasms. Since that he had been having seizures off and on until March 2004 he started having them every 7 to 10 days which for me is bad but after reading some of these messages these poor kids are having them a number of times daily. I guess what is concering me is that I was the one who asked my doctor about the diet and he agreed with me. What are your thoughts as parents and caregivers. Diane " 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 September 9, 2004 Report Share Posted September 9, 2004 Firstly, the diet is a big committment, and you need to be sure you want to do it before you start, or you will never give it your best... and will never know if it works. My daughter is not nearly as bad, off drugs, as many of the dear children parented by folks on this list. However, keto is her only chance at being seizure free, aside from a miracle - which I would gladly receive for her in a minute! Often children even with few seizures a month become seizure free and after a time are able to maintain freedom from seizures the rest of their lives. This is a big benefit of the diet. And, that is what we are all hoping for! Unfortunately, the diet always seems like the last ditch effort, when the drugs aren't working. In the future it may be one of the first things tried to gain seizure control. My daughter's seizures escalated with drugs. Because she had not been on drugs for a while and because she does not necessarily seizure even weekly, I was uncertain the diet worked for her for a while. However, almost like clockwork, she had one really bad week in every four weeks. We are not having those any more. A side effect that many attest to that makes it a special blessing is that often the cognitive skills/ alertness levels of the children go up. This is a quality of life issue. For my daughter, at age five and developmentally delayed, this was evident. Perhaps there were " subclinical " seizures happening that I was unaware of??? Whatever, she is now moving ahead developmentally, as well as not having the bad week every month of seizures. Personally, I hated giving my daughter drugs and watching her suffer not only the increased seizures but their side effects. Feeding her a high fat diet is much easier... and there is hope with the diet. My two cents... , mumma to dear s38992002 s38992002@...> wrote: I'm still looking for some help in deciding if keto is the way to go for n. I've been in the site for about a week and noticed that it seems that most of the kids have many more seizures than n. He has had a history of seizures since he was born (preemie with a brain bleed.) They were under control until 8 months of age he developed infantile spasms. Since that he had been having seizures off and on until March 2004 he started having them every 7 to 10 days which for me is bad but after reading some of these messages these poor kids are having them a number of times daily. I guess what is concering me is that I was the one who asked my doctor about the diet and he agreed with me. What are your thoughts as parents and caregivers. Diane " 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 September 9, 2004 Report Share Posted September 9, 2004 Hi Diane, if I were you and the meds are not working, I would definitely try it. Satnam, mom to Kristan, 21 months Keto kid since August 2003 > I'm still looking for some help in deciding if keto is the way to go > for n. I've been in the site for about a week and noticed > that it seems that most of the kids have many more seizures than > n. He has had a history of seizures since he was born > (preemie with a brain bleed.) They were under control until 8 > months of age he developed infantile spasms. Since that he had been > having seizures off and on until March 2004 he started having them > every 7 to 10 days which for me is bad but after reading some of > these messages these poor kids are having them a number of times > daily. I guess what is concering me is that I was the one who asked > my doctor about the diet and he agreed with me. What are your > thoughts as parents and caregivers. > > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Diane, if I were you and the meds are not working, I would definitely try it. Satnam, mom to Kristan, 21 months Keto kid since August 2003 > I'm still looking for some help in deciding if keto is the way to go > for n. I've been in the site for about a week and noticed > that it seems that most of the kids have many more seizures than > n. He has had a history of seizures since he was born > (preemie with a brain bleed.) They were under control until 8 > months of age he developed infantile spasms. Since that he had been > having seizures off and on until March 2004 he started having them > every 7 to 10 days which for me is bad but after reading some of > these messages these poor kids are having them a number of times > daily. I guess what is concering me is that I was the one who asked > my doctor about the diet and he agreed with me. What are your > thoughts as parents and caregivers. > > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi Diane I am very new to keto diet business , but I have always wanted to put my son on it even when he only had one seizure a month.We never had any control with medication ( have tried 5) and ph has been having all seizure types ( he has mixed seizure disorder) while on meds,including status epilepticus events.Moreover every time we added new meds we saw more seizures or new seizure types.ph started as having one seizure a month/two months and progressed to as many as over 50-70 seizures a day(myoclonic abcenses) and a few CPs and T/Cs a months.We started the diet about 3 weeks ago .ph is still having seizures and I did not expect he would become seizure free instantly, maybe he will never be ablle to be seizure free as his epilepsy is a rare and severe syndrome,but since we started his daily seizures reduced dramaticaly and we even have had a few days seizure free.This is almost a miracle as ph has not had seizure free days for over a year( except a copule of days when we started valproate).The diet is not difficult for us.After all what he has been going though, it looks very easy for me. I think you should try the diet if you do not trust meds anymore.It could be a miracle for your child, you never know Natasha, mom to 2 years old ph,suspected SMEI/Dravet's syndrome,keto kid since August 23d 2004 > > I'm still looking for some help in deciding if keto is the way to > go > > for n. I've been in the site for about a week and noticed > > that it seems that most of the kids have many more seizures than > > n. He has had a history of seizures since he was born > > (preemie with a brain bleed.) They were under control until 8 > > months of age he developed infantile spasms. Since that he had > been > > having seizures off and on until March 2004 he started having them > > every 7 to 10 days which for me is bad but after reading some of > > these messages these poor kids are having them a number of times > > daily. I guess what is concering me is that I was the one who > asked > > my doctor about the diet and he agreed with me. What are your > > thoughts as parents and caregivers. > > > > Diane Quote Link to comment Share on other sites More sharing options...
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