Can anybody help my son and I?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

A

Aodan

New
Messages
17
Reaction score
0
Points
0
I've had tonic clonic seizures for 30yrs. 20 or so years of those I was undiagnosed-normal EEG's, CAT's, & MRI's. Dr's told me I was doing it for attention! Two concusions, whiplash, and a series of other things, why would anyone pretend to have a seizure??? One time I was in the grocery store, had a seizure, (dropped) just as a kid placed the last lemon on the top a huge pyramid while my hand was on the "bottom" lemon. I hit my head, knocked myself out, and when I came to lemons were everywhere, and the poor kid was shaking his head. Look-e-loos everywhere-surprise. They tried every med under the sun. About 12 or so yrs ago I was finally diagnosed with with a "new" neuro disease (as Dr's told me) called Periventricular Nodular Heterotopia (PNH). The dr. said he wished I'd come to him sooner so he could have be published. I had 1 nodule in the mid right lateral ventrical. I now have 10. Med of their choice was-Depakote. A few years later in my mid 30's I got pregnant, and the neuro up'd the Depakote from 750 to 3750mg twice a day. I was very very worried because my son wasn't moving, not even during stress tests. They assured me things were fine. 6 amnios later at a dr's visit, I was immediately admitted to hospital. My son was diagnosed with Fetal Valproate Syndrome.
Does anyone out there have ANY info. on treatments for Fetal Valproate S. or PNH?
 
I wish that I could help, but I don't know anything about this. I hope you find the help you need.
 
Aodan:
Check out this site: ghr.nlm.nih.gov & type 'Periventricular Nodular Heterotopia'. Take care!
 
Hi, Hawke:
I'll look up the definition & I'll be right back...
 
Hawke:

Periventricular Nodular Heterotopia is a genetic disorder which begins as a fetus's brain develops. It's a defect in the pattern of the movement of neurons--the neurons collect along the outside of the lateral ventricles of the brain. The neurons can also collect in isolated patches, which appear as bands. The disorder manifests itself as epilepsy.
 
Aodon,

I have the same diagnosis. PNH. It is caused in the womb of the mother in the 5 to 7 th week approx. It is no ones faults. It happens. My Epileptologist would scratch their heads on my unusual seizures. Finally 3 years ago a special MRI was done and that showed the abnormality. My EEG always has been abnormal too. I have had 2 brain surgeries before the diagnosis but they were unable to diagnosis the true cause at the time. My seizures are still around, I do not drive or work. I volunteer a lot!!! I wish you the best! I am married and have raised 2 children!

I wish you the best!
 
Last edited:
My daughter has a heterotopia, and I was told this was the cause of her seizures. However, we have been able to keep her med free and seizure free, by making nutritional changes, and keeping her body as healthy as possible. Watching seizure triggers is important.
 
You must log in or register to reply here.
Back
Top Bottom