Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 Hello! It's so wonderful to see so many familiar names as well as new ones! I've missed the keto list so much since logging off 6 months ago when our family moved. Now that we are settled in and I find myself thinking of you all, it's time to resubscribe. Ahhhh, feels like being home! What a wonderful oasis this list is as we deal with the stresses of epilepsy. For those who don't know us, our 8-yr-old daughter was on the keto diet for 2 1/2 years before she weaned off in June this year. It was a miracle of seizure control the first year, but within the first two weeks of the diet she began having unexplained muscle cramps from head to toe. These worsened over time to consume most of her day, despite every thinkable dietary change, supplement, ratio tweak, medication adjustment, and visit to specialists. She was finally dx'd with dystonic spasms, and the only relief she got was while sleeping. By the time we decided to wean, she was suffering with these spasms 8-9 or more hours a day. As much as I hate seizures, I'd take them any day over these excruciating spasms. Thankfully, I've only ever heard of two other kids with this side effect from the keto diet. The docs still can't tell us what particular factor (ketosis? high fat?) was causing the extreme cramps, but she hasn't had a even single mild one since being fully weaned from the diet. Until doctors understand more about how the keto diet might cause dystonic spasms and how we can help my daughter avoid them, we will just keep on a regular diet. Her seizure control is pretty awful right now as we wait for her recently implanted VNS to ramp up to a therapeutic level. That's why I'm back...it's such a comfort to know there are others who understand the lives we live and who can relate to the path that has taken us where we are right now. Rose-Marie, mom to , age 8, Maple Valley, WA USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 Hi Rose Marie -welcome back Good luck with the VNS, everything crossed it will be 's answer for control, sounds like she is well overdue for a break. Is she on any meds at the mo? PS - carnitine deficiency was ruled out re the muscle spasms? ----- Original Message ----- From: don_gal@... Hello! It's so wonderful to see so many familiar names as well as new ones! I've missed the keto list so much since logging off 6 months ago when our family moved. Now that we are settled in and I find myself thinking of you all, it's time to resubscribe. Ahhhh, feels like being home! What a wonderful oasis this list is as we deal with the stresses of epilepsy. For those who don't know us, our 8-yr-old daughter was on the keto diet for 2 1/2 years before she weaned off in June this year. It was a miracle of seizure control the first year, but within the first two weeks of the diet she began having unexplained muscle cramps from head to toe. These worsened over time to consume most of her day, despite every thinkable dietary change, supplement, ratio tweak, medication adjustment, and visit to specialists. She was finally dx'd with dystonic spasms, and the only relief she got was while sleeping. By the time we decided to wean, she was suffering with these spasms 8-9 or more hours a day. As much as I hate seizures, I'd take them any day over these excruciating spasms. Thankfully, I've only ever heard of two other kids with this side effect from the keto diet. The docs still can't tell us what particular factor (ketosis? high fat?) was causing the extreme cramps, but she hasn't had a even single mild one since being fully weaned from the diet. Until doctors understand more about how the keto diet might cause dystonic spasms and how we can help my daughter avoid them, we will just keep on a regular diet. Her seizure control is pretty awful right now as we wait for her recently implanted VNS to ramp up to a therapeutic level. That's why I'm back...it's such a comfort to know there are others who understand the lives we live and who can relate to the path that has taken us where we are right now. Rose-Marie, mom to , age 8, Maple Valley, WA USA Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.