ketogenic diet

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stacey

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hi guys

i have recently been told about the ketogenic diet for epileptics and i wondered if anyone could please give their feedback on their experiences with it as im considering if it is a good idea for my 5 year old as his epilepsy isnt stable and im starting to think the meds arent all they are cracked up to be.

Any help is appreciated :)

Stacey
 
Hello Stacy,

My son has Lennox Gastaut syndrome. He has tried over 10 aeds and those didn't help at all. He started on the classic ketogenic diet at age 5 and within one week we saw a significant seizure reduction. The diet is not easy to do but worthwhile all effort when it works. My son is on the diet for 8.3 years (!) now, still having 90% less seizures compared to pre-diet. As soon as his ketone blood level is too low, we see an increase of seizures hit him again.
It's hard to predict wheter the diet will work for your son, it helps some kids, in others it has no effect. The only way to know is trying the diet for a few months.
 
Thanks Dutch Mom,

i have read more about the ketogenic diet and it doesnt seem so hard to cook with but did you have to have a dietician to keep a record and monitor his progress?

One problem which i am worried is my son is 17 kg and about 104cm tall so he is very lanky, do they lose alot of weight?
thanks for your input :)
 
Hi Stacy,

Kids always start the ketogenic diet under supervision of a neurologist and a ketogenic dietitian. Most kids are summited in a hospital or a keto center for 1-2 weeks together with a parent who is instructed how to calculate, how to weigh and cook the meals + how monitor blood- or urine ketones and glucosis.
After kids have left the hospital or clinic, the dietitian monitors the diet together with a pediatrician. Kids do need a check up every six months.
When a ketogenic diet is well calculated, kids are not supposed to loose weight. Calories and growth are stricktly monitored. My son did not loose weight, there was a period he gained to much and this had a negative effect on his state of ketosis and seizure control, we had to decrease calories to get him stable again. After 8 years of diet he still follows his growth curve well enough.

For me the website and parental forum of the UK Matthews Friends foundation was more usefull than the US Charlie Foundation wa, I recommend www.matthewsfriends.org and joining the forum. There is a lot of expertise and experience there and people are very willing to answer your questions.
 
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Hi

Thanks for the post that was very informative and i appreciate the help very much!!

i have had a look at the charlie website but i didnt know about the matthew friends one so i will definately have a look and see from there.

thanks
Stacey :D
 
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