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need input on meds(Depakote, Felbatol, Mysoline) & the keto diet
Thu, 09/30/2004 - 02:07Comments
RE: need input on meds(Depakote, Felbatol, Mysoline) & the keto
Submitted by monalisa on Thu, 2004-09-30 - 02:07
Hi. Lisa.
I am sorry to hear about your son,and what you have been through.I'm sure that we all want to try and help here in this situation if we can.There are some links here that you may find useful.
May I suggest that you have a read through them,and if you decide that you do want to speak to others in your situation,that you try posting within a couple of the forums mentioned in the links as well as this one.I have heard from Bridgette Sullivan(and whose support board link I have given) who posts in EFA,and is a member of the new Braintalk forum as well,that the NSE have added a new support board to their site,that might be worth checking out.
http://www.stanford.edu/group/ketodiet/
http://www.familyvillage.wisc.edu/general/ketogeni.htm
Hi. Lisa.
I am sorry to hear about your son,and what you have been through.I'm sure that we all want to try and help here in this situation if we can.There are some links here that you may find useful.
May I suggest that you have a read through them,and if you decide that you do want to speak to others in your situation,that you try posting within a couple of the forums mentioned in the links as well as this one.I have heard from Bridgette Sullivan(and whose support board link I have given) who posts in EFA,and is a member of the new Braintalk forum as well,that the NSE have added a new support board to their site,that might be worth checking out.
http://www.stanford.edu/group/ketodiet/
http://www.familyvillage.wisc.edu/general/ketogeni.htm
RE: need input on meds(Depakote, Felbatol, Mysoline) & the keto
Submitted by tibet2 on Wed, 2004-09-29 - 22:54
hi lisa, i'm so sorry for your daughter's diagnosis. that's a very difficult epilepsy syndrome. i'll start by admiting i am a keto fan. i wish i had done it as a child. but that is so long ago. i'm the one with E in our family and i have used mysoline for 25+ years. the drawback to mysoline is that it is a barbiturate, which suppresses seizure activity by suppressing all brain activity. it is not a med that is selective. neuropsych testing should show a decreased performance across the board. so, while it has been a great med for me, i don't think i would want to start a child on it. felbatol is such a serious med. it isn't without it's uses, but your daughter is so young that while keto is an option, it doesn't make sense to go with such a strong med. at least not in my opinion. i don't know much about depakote. your daughter is a very good age to try keto. make sure you have a good keto team assembled before you start it. my friend did keto with her daughter and needed to switch neuro practices in the middle of it.... she was not getting the support she needed. the silver lining was that the new practice has literally been a godsend. keto needs to be very carefully monitered, not just by the parents, but by the keto team. if you are determined to do it, i think you won't find it that difficult. you will know that you have given your daughter the best chance she has. i think keto is the best chance for a child. if one of my children had a type of epilepsy that was treatable by keto, i would have them on keto in a heart beat. have you ever watched " first do no harm"? i heard is was on one of the TV stations today and tomorrow. try to watch it. you might want to try posting on this board. one of the members, fay, has a son with lennox gastaut and she is a keto coach. she loves it. i think her son must be about young high school age by this point. keto got him out of his wheel chair and back on his feet. wendy, who posts on the same board gave keto her best shot. unfortunately her daughter had some previously undiagnosed metablolic disorder that was exacerbated by keto. you can find wendy and fay here. http://www.debraboard.org/cgi-bin/temp.plyahoo! also has a keto support board. EFA and MGH also have many parents with experience. i warned you i was a keto fan! i think about trying atkins at my age to see if it impacts seizures.... there has been some initial research indicating that atkins helps reduce seizures for some people... but it is very limited at this point. best of luck to you and your family.