Any info on Ketogenic Diet

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My three year old son has daily myoclonic seizures, as well as some generalized seizures. He is maxed out on Lamictal. He takes B6, and two weeks ago Zonegran was added to his medications. His seizures have gotten a little bit better, but he has lost words, and has regressed. Prior to this, we tried Topomax, and he had a horrible reaction.We want to try the Ketogenic Diet. I just e-mailed Johns Hopkins about it. Have any of you tried it? Any success? Thank you!

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RE: Any info on Ketogenic Diet

Submitted by frozenmudslide on Mon, 2005-03-14 - 09:27

I am new to this board. My son is 8 months old, and has anywhere from 10-40 seizures a day now. He was having over 800 a day until a few months ago. He has been on Phenobarbital since 3 weeks old (when he was diagnosed) and several other meds. Topamax - seemed to have no effect, Klonopin - made him like a rag doll and he lost all development he had gained to that point, Depakene - caused him to have more seizures (when he spiked to over 800 in one day), Zonegran - this one caused some major muscle coordination problems - his left arm was always very stiff, and he couldn't really do much while on this drug. A few days after he came off Zonegran we saw some great improvements. His seizures now are absence, myoclonic, and 2 other seizures that they have yet to classify. Also, the past 3 days he has been having seizures in the middle of the night and doesn't even wake up when having them, sleeps right through them. Currently he is on Pheno and Topomax

Anyways, to make a long story short - they are going to now try him on the Ketogenic diet. We have an appointment today to meet with a neurologist and nutritionist at Boston Children's Hospital. Does anyone have any advice or experience with infants on the Ketogenic diet? It all seems so extreme for such a little guy. But at this point I'm willing to do whatever it takes to get rid of his seizures.

I am new to this board. My son is 8 months old, and has anywhere from 10-40 seizures a day now. He was having over 800 a day until a few months ago. He has been on Phenobarbital since 3 weeks old (when he was diagnosed) and several other meds. Topamax - seemed to have no effect, Klonopin - made him like a rag doll and he lost all development he had gained to that point, Depakene - caused him to have more seizures (when he spiked to over 800 in one day), Zonegran - this one caused some major muscle coordination problems - his left arm was always very stiff, and he couldn't really do much while on this drug. A few days after he came off Zonegran we saw some great improvements. His seizures now are absence, myoclonic, and 2 other seizures that they have yet to classify. Also, the past 3 days he has been having seizures in the middle of the night and doesn't even wake up when having them, sleeps right through them. Currently he is on Pheno and Topomax

Anyways, to make a long story short - they are going to now try him on the Ketogenic diet. We have an appointment today to meet with a neurologist and nutritionist at Boston Children's Hospital. Does anyone have any advice or experience with infants on the Ketogenic diet? It all seems so extreme for such a little guy. But at this point I'm willing to do whatever it takes to get rid of his seizures.

RE: RE: Any info on Ketogenic Diet

Submitted by AmyQ on Mon, 2005-03-14 - 22:36

Hi, Frozenmudslide!Just to let you know, next week my son is being admitted to Boston Children's Hospital to start the diet. So, you must have met with the same people that we met with (Dr. Bergin, etc.). My heart goes out to you... so many seizures. Unfortunately, because we haven't started the diet, I don't have any positive or negative experience. Also, our son is now three. So, you should speak with parents of an infant. You should call the social worker or one of the members of the Keto team and ask to be put in touch with parents of an infant who went on the diet. I think that might be the best way to get some first hand info. Keep in touch! I'm dying to know how it goes!!!- AmyQ

RE: RE: RE: Any info on Ketogenic Diet

Submitted by Kristi on Tue, 2005-03-15 - 08:19

Good Morning,

I have two sons with epilepsy. They both were on the diet. One has been 5 yrs seizure free. But, the other is still having seizures. It's a very hard diet. But it is worth it!!!!!!!As soon as my one son went into Ketosis his seizures stopped. They have not returned!!! We're still trying to stop my other sons.

Good Luck on the Diet!!! You can do it!!!

God Bless You and Your Family!!!

Kristi