Mom of child with Childhood Absence

[JenM]

My daughter Alessandra is a happy, bright, articulate 6 yr old just beginning kindergarten who has taught herself to read. She began mentioning episodes of her vision going black for just an instant about 6 months ago. These happened about once a week. When it became more frequent, we checked out her eyes---no problems and finally had an EEG the end of August. A doctor was brought into the testing room to confirm Childhood Absence Epilepsy--our official follow-up visit to review the results is Oct 3.

I've been doing a bit of research and learned that this form of epilepsy is on-set primarily in girls between the ages of 4-6 and in 80% of the cases, disappears by age 12. I have learned that the neurologists in my area tend to be skillful, yet very busy and therefore not too responsive. Since we have not seen our assigned Dr yet, I don't know his recommendation, but have been told by a few people that medication is nearly always recommended so kids stay focused and don't zone out during school. However we have not yet observed her spacing...she always tells us when it happens and gets right back to reading or whatever she was doing.

I have begun to research neurofeedback as an additional recourse (that's how I found this site). Our pediatrician is familiar with it and has investigated it for ADHD...but was not suffieciently swayed by research (or lack of) and experience to refer his patients for this treatment. He seemed dubious about it's potential for seizures/epilepsy.

Thanks for reading all this--just looking for the experience of others regarding Absence Epilepsy, children & medication and neurofeedback results. I'm trying to be prepared for our Dr. visit and the types of questions I should be asking and also mindful that it may be necesary to seek out another Dr.
Thanks :shock: (Yes, a bit like deer in headlights)

[Bernard]

Hi Jenifer, welcome to the forum.

I'm sure you've already read about our experience with EEG neurofeedback. It took a long time before we noticed any significant results. It's the type of thing that requires dedication and patience for at least 5 months before making any judgements - and that can be hard to swallow financially (at least it was for us since insurance did not help).

I can't recommend it enough if you can afford it (and have the patience to give it a chance).

[JenM]

I had estimated the cost to be about $6000...which I can't afford, but have heard of a local MD that does neurofeedback and submits it as an office visit so it can receive up to 70% coverage. I need to see if this doctor is in our plan.

[Bernard]

That would definitely help!

[Bernard]

Hi Jen, did your daughter follow through with EEG neurofeedback training?

[smint]

Hi, I'm new here...

I also had childhood absence epilepsy, happened when I was about 5 years old. Since then the doctor took me off medication when I was about 8 years old or so, but now my condition has come back as juvenile myoclonic epilepsy, so perhaps there is some chance of it coming back...

[JenM]

Our neurologist was not as negative regarding neurofeedback as I assumed he might be...however, he convinced us that her erratic brain function was deep in the core with absence epilepsy, not in a surface area and therefore she would not benefit at all from neurofeedback.

We started her on Zarontin and she began to have near daily blackouts of just an eyeblink in length. She is now taking Depakote and has had only one blackout in 7 weeks. These medication have so many precautions and possible side-effects, it is a little worrysome to think that she may be on this for years.

From what I have read, this type of epilepsy goes away during the teen years. I'd like to hear what other people might have experienced.

[Bernard]

... she would not benefit at all from neurofeedback.

That's a pretty strong (and I think completely wrong) statement. Neurofeedback is a training system for people to learn how to normalize their brain function. Just because the leads measure impulses on the surface doesn't mean that control isn't managed deeper down.