Thursday, July 21, 2005

Feelings about Phenobarbatol

When my daughter had her seizures last April the doctors started her on an anti-seizure medication called Phenobarbatol. The doctors explained that this medication is a barbituate and a controlled substance. They said it could cause drowsiness or insomnia, irritability and some other minor side effects, but that it is safe and had been in use for many years.

I'm not terribly familiar with prescription medicines, but it seemed to me that this particular prescription kept her entire brain in somewhat of a dampened state and that's how it kept her from having any further seizures. But it was that dampened state that seemed to be the problem. My daughter was on this stuff for over a year to ensure she didn't have a relapse and I really feel like she was held back just because she was so out of it most of the time. She would respond to her surroundings and interact with her environment, but it was almost like she was in a dream-like state. She just wasn't all there.

Thankfully her wonderful pediatrician didn't force her to take any more of this than she had to. As my daughter's weight increased he kept the dosage the same or only slightly increased it. That allowed her to be in a gentle weaning process throughout the year.

However, it was when we took my little one completely off the medication that I saw so much of a difference. She seemed so much more awake and interactive. She played with her toys more, paid more attention to her surroundings and listened more when people talked. Since she got off the medicine back in May, she's learned to turn circles while sitting, she's more vocal, and she's started saying one or two words either with speaking or signing. I don't think this burst of progress is just coincidental. It's just that she's now able to use all the faculties of her mind to the full extent.

I'm very grateful that Phenobarbatol kept my daughter from having any more seizures, but I'm even more grateful that the medication is now in her past. I know there are other anti-seizure medications available for people with epilepsy and so forth, but they're often not used in pediatric cases because they're newer and possibly not as safe. I'd really like to see more studies being done, so children with seizures aren't so drugged up during their important formative years. It's so important that they have their faculties about them as they explore the world they've just been born into. I hope there will be some good progress in the near future. I know it would really help children everywhere.


Unknown said...

My daughter suffers from seizures and is now taking phenobarbitol. She is just the way you described your daughter when she was on the medication. I hope soon that she will be able to stop the medication as well and your story gives me hope that her mental state will improve once she is weened off.

Nate said...

I wish you and your daughter the best. Seizures can be very difficult to deal with but sometimes the treatments aren't much better. I hope she's able to get off those brain-dampening meds soon. Hang in there!