New to Forum

[swkhan]

Hi Everyone
I'm new to this Forum. My daughter started having seizures when she was 18 months old and is now 11 years old.
She has a genetic condition (Trisomy 8q terminal end) - only 4 or 5 cases in the world. And is mentally handicapped (about 3.5 years mentally). So she can't really tell us how she is feeling. She had a left temporal lobectomy in December 2009 and since then has been feeling more energetic (before all she wanted to do was sleep).
She's been on so many meds. Right now she is on gabapentin and pheno-barbital and suddenly she is getting so angry and aggressive. She was on clobazam/clonazapam before and that always caused aggression. but it's been about a month since she has been weaned off.

We are wondering if the pheno-barb is making her aggressive? she just started it about 2 months ago.

Thanks everyone!
Shaila

 

[Nakamova]

Hi Shaila, welcome!

Unfortunately, heightened aggression and irritability can be a side effect of both gabapentin and phenobarbital. And children are especially vulnerable to this side effect, even more so if they are mentally handicapped. Is there a chance your daughter could try a different med, or even try just the phenobarb or the gabapentin alone? I know the "medication merry-go-round" is unpleasant, but is there a chance something else might work better? Have you mentioned the aggression to her doctor?

Best,
Nakamova

 

[epileric]

I was on phenobarb when I was a kid for a short while.

I went from being very passive and laid back to putting my fist through the wall in our house- twice.

 

[swkhan]

Thanks for the feedback everyone!! I've contacted her neurologist so let's see what he says. And it's frustrating since the pheno barb has been great at controlling her seizures!

 

[Endless]

Swkhan,

Welcome to the forum!

What a time you have had of it with your little one. I am so sorry she has gone through so much.

Here's what drugs.com had to say about phenobarbital

Less than 1 in 100 Patients: Adverse reactions estimated to occur at a rate of less than 1 in 100 patients are listed below, grouped by organ system and by decreasing order of occurrence:

Nervous System: Agitation, confusion, hyperkinesia, ataxia, CNS depression, nightmares, nervousness, psychiatric disturbance, hallucinations, insomnia, anxiety, dizziness, abnormality in thinking.

http://www.drugs.com/pro/phenobarbital.html

They don't say what "psychiatric disturbance" means, but I'd think it could mean almost anything. So could abnormality in thinking.

When I googled phenobarbital and aggression, a bunch of stuff popped up so we know she is not alone in this. It seems to be a reaction that a lot of people have written about.