Hi my name is Becky, I stummbled into this site while trying to find information, thoughs, idea, or any advice comin from people who actually tell the real story. My daughter Alexis age 5 began havin seizures in Jan 10, four failed medications and two hospital stays (we are currently admitted) we are now going to have a G-tube placed tomarrow and begin the ketgentic diet. Alexis is also special needs she has a rare chromosomal abnormally, and has been through an awful lot. If anybody has anything that might help we would really love to hear from you.Thanks so much
ketogentic diet in hospital now
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Hi luvubabe, welcome!
So sorry to hear about your daughter's struggles with epilepsy and epilepsy meds. You might want to check out The Nursery forum, where parents of kids with epilepsy have posted. You might want to check out these threads:
http://www.coping-with-epilepsy.com/forums/f42/prep-ing-4yo-keto-6292/
Best,
Nakamova
So sorry to hear about your daughter's struggles with epilepsy and epilepsy meds. You might want to check out The Nursery forum, where parents of kids with epilepsy have posted. You might want to check out these threads:
http://www.coping-with-epilepsy.com/forums/f42/prep-ing-4yo-keto-6292/
Best,
Nakamova
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Welcome Luvubabe,
I live in The Netherlands and I do have an 11-year old special needs son with Lennox Gastaut syndrome as a result of braindamage. At age five we had tried >10 AEDs without succes and we started the ketogenic diet. It was effective in week one, his seizures are reduced by 80-90% and his EEG has improved >70%. We're doing the classical ketogenic diet at ratio 4:1 for 6,5 years now, he has been med free since 5,5 years.
When we just started the diet I found a lot of good information and great support from other parents and several medical advisers (a child neurologist, several dieticians, a specialist in their meal calculator etc. participating in live chat sessions) on the matthews friends family forum which I would like to recomment to you as a great resource: www.matthewsfriends.org
You can read my son's story (written 4 years ago) here
http://site.matthewsfriends.org/index.php?page=joni-s-story
I do wish you and your girl all the good luck in the world.
May the diet make the difference for her too!
I live in The Netherlands and I do have an 11-year old special needs son with Lennox Gastaut syndrome as a result of braindamage. At age five we had tried >10 AEDs without succes and we started the ketogenic diet. It was effective in week one, his seizures are reduced by 80-90% and his EEG has improved >70%. We're doing the classical ketogenic diet at ratio 4:1 for 6,5 years now, he has been med free since 5,5 years.
When we just started the diet I found a lot of good information and great support from other parents and several medical advisers (a child neurologist, several dieticians, a specialist in their meal calculator etc. participating in live chat sessions) on the matthews friends family forum which I would like to recomment to you as a great resource: www.matthewsfriends.org
You can read my son's story (written 4 years ago) here
http://site.matthewsfriends.org/index.php?page=joni-s-story
I do wish you and your girl all the good luck in the world.
May the diet make the difference for her too!
thanks so much...i have visited matthews site, and his story actually confirmed we had nothing to lose, and the diet was at least worth a try. you have alot of helpful information and what strength everything you and your family have given me.....i only hope and pray this is one of the the miracles we can share someday.