One of my good friends daughter is undergoing testing for Glut 1 Deficiency Syndrome. She is 5 years old and began having seizures, tics and is regressing in kindergarten. I was diagnosed with epilepsy at the age of 12 and I thought I knew so much about seizures and epilepsy until my friend started asking me about this. I have never heard of it before. Does anyone have any experience with Glucose transporter Syndrome?
Yes i have to eat every 3 hrs and carry glucose plus an emergency injection.It has caused me to go into a full blown seizure You really have to pay attention to how you are feeling and keep up with the times you've eaten.Good luck to her.
sometimes i have fainting spells and end up seizuring when my glucose gets low it happens and i stare off into space just sit tight and try not to move alot if the child is seizuring get them down in the right position
It's a lot like having low blood sugar. If it falls low enough you will go into a seizer, possibly coma and death.I have to carry an injection with me at all times.I'm sure the dr. Will give her one.
I haven't been diagnosed with it, but I read about it before I had my MRI done recently. It says it is controlled by the Ketogenic Diet. I am not sure if I have it or not, but I have been more successful with Modified Atkins Diet, and recently have been getting off of medications. I am currently being weaned off Clonazepam. I got off Lyrica in November and was taken off Aptiom in September. I am still on Levetiracetam and Topiramate syrup forms, but I have been feeling somewhat stuffy and sneezing after taking the syrup in the morning. My neurophysiologist thinks it is the Clonazepam though-it's my only pill form left and contains Cornstarch(which I am allergic to) in the inactive ingredients.
What kinds of things do you eat @A MyEpilepsyTeam Member ?