Toddler with Atonic seizures

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Forum -> Children's Health

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amother

Wed, Mar 17 2021, 2:59 pm

Does anybody have experience with this?

Rappel

Wed, Mar 17 2021, 3:01 pm

Yes. Ours were febrile seizures, and they presented in a variety of ways. If I can be of assistance in any way, I'm happy to tell you what we went through.

amother

Cobalt

Wed, Mar 17 2021, 3:16 pm

Yes- my daughter was having tonic seizures multiple times a day along with absence seizures.

amother

Red

Wed, Mar 17 2021, 3:19 pm

I had seizures when I was a child. Not sure which classification, possibly absence. I may be able to give you perspective from your child's point of view. Please let me know if I can be of assistance.

amother

Wed, Mar 17 2021, 3:29 pm

amother [ Cobalt ] wrote:

Yes- my daughter was having tonic seizures multiple times a day along with absence seizures.

you say was- is she not having them anymore?

amother

Wed, Mar 17 2021, 3:31 pm

Rappel wrote:

Yes. Ours were febrile seizures, and they presented in a variety of ways. If I can be of assistance in any way, I'm happy to tell you what we went through.

yes I would love to hear. My son is 2 and he is not responding to medication. As well, his development has completely stalled. No talking, comprehension etc

amother

Cobalt

Wed, Mar 17 2021, 4:20 pm

amother [ OP ] wrote:

you say was- is she not having them anymore?

Yes- she was on (and still is) onfi, depakote and lamictal with no success. We started the ketogenic diet and 4 months later she was seizure free. It’s 3 years later and she’s still on the diet and meds but she’s doing great!

amother

Cobalt

Wed, Mar 17 2021, 4:21 pm

amother [ OP ] wrote:

yes I would love to hear. My son is 2 and he is not responding to medication. As well, his development has completely stalled. No talking, comprehension etc

My daughter had regressed terribly. She lost all her words, didn’t know her siblings names etc
She’s gotten everything back and more. I cannot say enough good things about the diet eventhough it’s a full time job.

jeweled

Wed, Mar 17 2021, 4:23 pm

amother [ Cobalt ] wrote:

What is the diet?

amother

Cobalt

Wed, Mar 17 2021, 4:27 pm

jeweled wrote:

What is the diet?

Ketogenic diet. It needs to be started in the hospital where they teach you it. The first couple of days the seizures get much worse (which is why you’re in the hospital). She’s allowed 15g of carbs a day. This includes any vegetables or fruits or anything. The rest is heavy on protein and fats.
It’s a miracle for children with severe seizure disorders.

amother

Aubergine

Wed, Mar 17 2021, 4:28 pm

I have friends who use this diet for two of their children in similar circumstances. It basically means cutting out all carbohydrates. You need to work with with a qualified nutritionist who is experienced in this. I think they were allowed ten grams of carbohydrates per day initially. Meat is preferred over chicken, and cream over milk. The body needs to be getting g its calories from fats and proteins.

It's hard work, especially to start with, and can be expensive, and cheating isn't even an option, but it is often very successful. These children have been on it for over ten years now and are seizure free with normal development.

amother

Mon, Apr 19 2021, 6:18 am

Bumping to see if anyone knows of a seizure support group?

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