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Thread: Ketogenic diet

  1. #1
    New Community Member
    Join Date
    Jul 2007
    Cochranton, PA USA

    Default Ketogenic diet

    Tell me about it, pros and cons. Karen

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
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    I don't know anything about the Keto diet. I hope those with experience will stop by to offer their insight.

    Maybe posting on the Epilepsy board as well will elicit some responses.

    Just wanted to say that it's great to see you here. Hope you'll visit often.

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    So. Calif.


    We tried it years ago with no success. Tyler hated the food, hated being hungry and being in ketosis never touched his constant seizures. However, we were warned that we had a third of a chance of it reducing the seizures, a third of a chance of stopping them completely and a third of a chance of it not helping at all. Unfortunately, we fell into the latter. I do know of many children that have been tremendously helped by the diet and am thankful that we at least gave it a try. It is non invasive and easy (though time consuming) to do. Looking back, it would have been much better if Tyler were completely tube fed at the time, cause then he wouldn't have tasted the food (or formula, if you are going that route). It seemed like such a simple fix to us compared to all of the drugs we had to try with all of the nasty side effects or the thought of surgery (which was denied Tyler cause too much of his brain was seizing). Tyler was 19 months old at the time we tried the Keto and that was a lifetime ago. I would imagine much has changed by now with the diet. Back then, it was a new concept and few hospitals or dietitians knew much about it and even fewer neurologists supported its use. Much greater support now and it is better understood and accepted as a viable treatment for some seizure cases.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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