New here! Mom of little one with CAE.

[Sijo's Momma]

Hi! I'm Valerie. My youngest son, Simon, (who will turn 4 tomorrow!) was diagnosed three months ago with CAE. He had febrile seizures from 11 months old until he was 2 1/2. (My husband and another son also had febrile seizures as toddlers.) At the end of March, I noticed while we were doing a jigsaw puzzle that Simon was doing something "weird" with his eyes. He did it a couple more times, and I knew that it wasn't just something he was doing to be funny. Right then I told my husband, "This baby is having petit mal seizures!" (I had a close friend whose son was thought to be experiencing them a few years ago, otherwise I would have had no idea!) That was on a Sunday. Tuesday we were having an EEG, and three weeks later we were at a pediatric neurologist's office. He went from having no discernible seizure activity to having around 30 spells per day in less than a month. He now takes ethosuxamide and levitiracetam. We are still not at the point where he has no seizure activity each day, so we're trying to find the right dose and combination of medicines.

At first, I thought that this would be no big deal. He'd take the medicine, we'd be back to normal, and that would be that. It's not working out that way. Of course I'm hoping that he will eventually grow out of them, but it seems until then, he's going to be a bit complicated. I'm at the point now that I can begin to think about alternative treatments or ways to help him in addition to the medication. We have an amazing doctor whom I trust and who welcomes interaction and questions from parents. I guess what I'm looking for here is two-fold: I want to gather information and tips from veterans, and I want to have a place to ask those silly questions that pop up from time to time.

I'm glad to be here!

 

[Nakamova]

Hi Valerie, welcome to CWE!

We have many members who are parents of children with epilepsy, and I hope they can be a good resource and support for you. One treatment that some have found particularly helpful with childhood epilepsy is the ketogenic diet. If the medications don't bring your son's seizures under control, or if they have problematic side effects, you may want to ask the neuro about a dietary approach.

Best,
Nakamova

 

[Ruth]

Welcome to CWE,

I am glad to meet you Valerie.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

What is CAE?

I noticed that your son is on Keppra. I am too. My neurologist told me to take Vitamin B Complex once a day. Keppra depletes the body of Vitamin B. It will offset the side effects.

I have had no problem with Keppra. Some on the forum have.

 

[Sijo's Momma]

Hi, Ruth! Thanks for your reply! I should have been clearer; CAE is Childhood Absence Epilepsy. He has had no problems at all with Keppra so far, thankfully, but he's on a relatively low dose at the moment. Were in the process of increasing his dose, though, so I'll keep the B6 in mind. (His neurologist did mention that he might need it in the future.)

 

[Sijo's Momma]

Hi, Nakamova! Thanks for replying! I've been reading about eating a ketogenic diet for epilepsy. It seems like something we could definitely do, and if it helped him not have to take as much medicine (I'm not even dreaming it could completely stop the seizure activity), it would be worth it!