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← Return to #AsktheMayoMom about Pediatric Epilepsy
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Hi @clairesmom,
Welcome to Connect. I'm so sorry that you have to see your daughter go through this, but I'm glad you joined us. You will see that I have moved your discussion to this group titled, "Ask the Mayo Mom about Pediatric Epilepsy"
If you scroll up. you can watch and hear Mayo Clinic Dr. Mattke and Dr. Wirrell discuss pediatric and intractable epilepsy.
Here is a quick link to another Mayo Clinic webinar held last year, as well (Pediatric Epilepsy Treatment Options):
http://mayocl.in/2gpvuvH
I would also like to introduce you to @blath2000, @ketomom, @hermsenk, @inkdfrog, @krd94; I'm confident that they will provide more information that will help you help your daughter.
Although, not directly related to Glut 1 Deficiency Syndrome, I would encourage you to read about this research program at Mayo Clinic where one of the areas is glucose sensing: http://mayocl.in/2hjdq8g
@clairesmom, how have you managed her symptoms thus far? Has Claire's doctor suggested genetic counseling for the Glut1 DS?
Replies to "Hi @clairesmom, Welcome to Connect. I'm so sorry that you have to see your daughter go..."
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Hello. Thank you. My daughter is a patient at Mayo Clinic. We travel 14 hours each way to go there every 3 months. I've done a lot of research and we have the keto diet pretty well down. We make our own recipes so our daughter can have the same meals we have (with some additional tweaks for her). We have had genetic testing and the gene mutation for Glut 1 was not found at that time. The keto diet changed our lives and, especially, our little girl's life. She is full of energy and most of her seizure activity has stopped. We had been to other hospitals in Denver and Salt Lake but nobody had any answers until we came to Mayo. We will never go anywhere else. Mayo is excellent in patient care, efficacy, and communication.