Ketogenic Diet

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momofevan

momofevan

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my husband and i have decided to look into the ketogenic diet for evan. He is on 5 meds and still having seizures on a daily basis. We are still awaiting the results of the spinal tap, but have decided before we try the VNS we are going to give the ketogenic diet a chance first. He is scheduled for admission on Aug 2-6th...anyone have any advice or links or info to share with me on this..
 
I don't have any advice as we haven't tried the diets yet, but I wanted to say good luck and I hope he gets some relief from his seizures and is able to reduce his meds.
 
Good luck. I hope you see positive improvements for Evan.
Stay strong mom... it is challenging from time to time to stay with a creative nutritional plan. If there are mis-steps, don't get down on yourself. Remember you are doing the very best you can for your little one. It is a process, with a tremendous amount of information to be learned. Be gentle with yourselves along the way.

Hugs to Evan
 
I just happen to know a Keto coach personally! I'm sending you info in a pm.
 
I strongly recommend the forum on www.matthewsfriend.org The parents there do share priceless advice, experiences, recepies and the very best support you can wish. Matthews Friends Foundation is organizing their next (international) family conference in autumn, my husband and I were on the conference in 2007 and it was great.
http://site.matthewsfriends.org/index.php?page=global-symposium-2010-2

MF Forum: http://forum.matthewsfriends.org/index.php?app=core&module=global&section=register (you have to sign up first.)

My son's story (written in 2007) http://site.matthewsfriends.org/index.php?page=joni-s-story

Which meds is Evan having now? It's better to wean off at least two meds before starting the diet, 5 is too much and can interfer with the effect of the diet.
Not all meds are compatible with the diet, some of them give unacceptable risks and side effects in combination with the ketogenic diet, others contain sugar, non-keto proof sweetners (like sobitol, manitol, maltitol, xylitol, fructose, maltose, sucralose) and/or have too many calories.
For example: most liquid meds are not keto-proof, we had to wean off Ethymal because of wrong sweetners in it. And Topamax because this med gives highly increased risk on kidney stones and kidney failure together with the diet.

Drug interactions: http://site.matthewsfriends.org/uploads/pdf/DrugInteractions.pdf
 
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My daughter Aurora was on the Ketogenic diet for 3 years. We saw a huge improvement at 1st. As others have mentioned, it is a hard diet to be on. We have a child with a g-tube for feeding so for us it was very easy. If your child eats food orally, it can be much harder to get the needed calories without the carbs. this diet will also keep your child in a state of ketosis which means they are always on the cusp of dehydration and starvation; so meds must be all sugar free and water intake has to be monitored strickly. It is not easy but sure is less invasive than implanting a vns...we won't go there yet. long and short, hard but can really be worth it. my freind's daughter has been on it for 4 years and is seizure free. maybe it will be the best thing to try for your family; good luck. Kimmi-
 
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