Seizure Free Keto Kids

Who We Are

Hi! This is a Ketogenic Diet group for parents of kids who are seizure free (or greatly improved) on any version of the diet (Classic Ketogenic Diet, Low Glycemic Index Treatment, Modified Atkins Diet, or MCT Oil Diet.) Keto teens ages 13 to 17 may participate with a parent's permission, and young adults over 18 are welcome to join as well! It's a place to share success stories, keto-friendly recipes & products, find support, offer help, and celebrate our kids! To join the group, you/your child should be under the care of a keto team, and be seizure free (or greatly improved) on the diet (on or off seizure meds.)

No one should use information shared here as a substitute for medical advice from your own keto team. Always check with your keto team's dietitian before trying any new products, or making any changes to your child's/your keto diet prescription!

I hope you will find Seizure Free Keto Kids to be a warm and supportive place to talk about the diet, your kids, your fears and concerns, as well as your joys and successes on the diet.

Welcome to Seizure Free Keto Kids!

Patricia - Mom Moderator
and
Deborah - Young Adult Moderator

Sunday, August 29, 2010

Deborah's Story

I am a young adult with Congenital Central Hypoventilation Syndrome (CCHS.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep. In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.)

I have a trach and am on a ventilator 24/7. Before I was on a ventilator full time, my carbon dioxide levels were too high, and that caused seizures. I've been on the ketogenic diet for 16 months, and my last seizure was December 17, 2009. The seizures caused some damage, though, so I need a wheelchair to get around. I am, however, making great progress in OT & PT now that the seizures are under control!

I am on the classic ketogenic diet, and get half my calories continuously through my J-tube from a 3.3:1 ratio keto formula, and the other half from two meals at a 2.5:1 ratio. My keto team wants me to stay on the diet for at least two years from my last seizure, so I still have a way to go before weaning off the diet. The ketogenic diet is hard to follow sometimes, but my mom and nurses help me, and being seizure free is well worth all the effort!

Saturday, August 28, 2010

Welcome to the Seizure Free Keto Kids Blog!

Welcome to the Seizure Free Keto Kids Blog! We are a Ketogenic Diet group for parents of kids who are seizure free on any version of the diet (Classic Ketogenic Diet, Low Glycemic Index Treatment, Modified Atkins Diet, or MCT Oil Diet.) Keto teens ages 13 to 17 may participate with a parent's permission, and young adults over 18 who are seizure free on a keto diet are welcome to join us as well! It's a place to share success stories, keto-friendly recipes & products, find support, offer help, and celebrate our kids! This Blog will feature profiles of our Seizure Free Keto Kids, list resources and Blogs, and be a place to share helpful keto hints and recipes. There is also a music player at the bottom of the Blog page, and our Support Group can be found at http://health.groups.yahoo.com/group/SeizureFreeKetoKids/