Wednesday, October 01, 2014

Between a rock and a hard place

That pretty much describes the situation that many parents of children who have seizures find themselves in. Seizures are not great things and no one wants their child to have them. The seizures either continue to harm the brain or the seizures are a result of a brain abnormality or injury that already happened. It seems to be one of those things that neurologists like to discuss among themselves but don't look too terribly happy when it is asked of them by a parent. So the whole thing starts out dicey to begin with.

The good news is that there are a lot of different medications that have been created to help stop seizures. The bad news is that finding the right one requires a bit of trial and error. Each medicine reacts with the brain chemistry of each person differently and affects the seizures differently. One medicine can be great for one child and stop their seizures with few side effects. That same medicine in another child can make them into a hellion who bears no resemblance to the actual child. You just never know how a child  and the child's seizures will react to a medicine before you try it. And because these medicines sometimes have an introductory period while the body adjusts to them, you also don't know if monster child will improve or if the monster will rage more until you have given it a fair trial.

Then there is always the option of surgery to separate the two parts of the brain which often does have the effect of stopping the seizures. It also comes at a cost in physical functioning and perhaps some expressive language costs as well. And with that option, there is no weaning back off of a medication that isn't working.

You could always live with the seizures, but then you have what is called Sudden Unexpected Death in Epilepsy or SUDEP. This is exactly what is sounds like. People who have epilepsy with uncontrolled seizures have a 1 in 3000 chance of dying unexpectedly with no apparent cause. It's often lumped together with SIDs in the literature you can find if you research it. Once again, no one really knows what is going on or why, except that uncontrolled seizures significantly up a person's risk of it. Fun stuff, people, huh?

We are now trying seizure medicine number three with H. She was allergic to the first one (an allergy that can be potentially deadly if the medicine is not stopped), the second one compromised her brain functioning to such a degree that it was as though she had no short-term memory, and after a week, I don't have high hopes for this third one. It seems to affect the reading centers of her brain and words she had no difficulty reading a couple of weeks ago are proving torturous to get through now. I am not really a very patient person and this is taxing for all of us. M. happened to be here the other day and asked if I should call the phone company to work off some of my frustration which was evidently oozing out of me. She may have been joking. Or not.

So here we are. I don't like the looks of doors 1, 2 or 3 and at this point I don't have high hopes for the next three, either. Really, what it boils down to is that, while a lot of new information has been gathered about the brain and how it works, we still know very, very little. It stinks. Even stinkier? Sometimes all this feels like some of the easier things we deal with on a daily basis.

2 comments:

Tanya said...

I was mistakenly put on seizure medication for a while when I was in college. (As in, I was later found to not have a seizure disorder.) I, too, had problems with side effects. I can say that it is emotionally a very frustrating type of medication to be on. No matter what medicine I was on, I felt like I was in an emotional straight-jacket. My vision was also affected. I remember having a really hard time focusing on a computer screen as I scrolled down while reading an article. I pray she has an easier road and can find a good medication. It sounds like she has fantastic parents.

Shecki Grtlyblesd said...

I had never heard of SUDEP! We are living with untreated seizures here. Have to talk to the neurologist tomorrow and see about meds.

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