An acquaintance of ours was watching me give Lizzie her feeding the other day, and when I started to give her medication asked what I was doing.  When I told her I was giving Lizzie her medication she asked what it was for.  

“Seizures,” I told her.

“I thought she didn’t have those anymore,” is what she said.

I had to explain that while Lizzie hasn’t had any seizure activity in almost two years, it was because of the medication that she was on that she didn’t have them.   Not because she no longer has epilepsy.

“I thought you took her off of that medicine.”

I explained that while we took her off one medicine that was holding her back developmentally, we had to replace it with something else to control the seizures.  We were lucky to find a combination that works for her.  Epilepsy is a tricky thing, and it doesn’t usually just go away.

While some people, like Lizzie, find medications that stop their seizures, they can still build up a tolerance to the medications or outgrow the dose and symptoms can return.  Some people have surgery to correct the problem, and some people have a device implanted to interfere with the seizure activity.  But these are treatments, not cures.  And while some people do find relief, for some people nothing helps.

While Lizzie hasn’t had a seizure in a long time, I will never fully relax and think that she is “cured”.  With the amount of brain damage she suffered before birth from her hydrocephalus, and the brain surgeries she’s already had, I don’t doubt that she will always be at risk of another seizure.  Saying that Lizzie will never have another seizure is like me saying that I will never have pain from my rheumatoid arthritis again just because I didn’t have pain today.  It’s always a possibility.  It will always be at the back of my mind.  And we will always do what we need to so that the risk is as minimal as possible that she will have a relapse.  She may very well be on medication for the rest of her life.  But if that keeps her from having seizures, I will be thankful.

So I guess the point of this entry is that just because a person who has epilepsy hasn’t had a seizure in years, that doesn’t mean they are cured.  It could just mean that their current treatment is working for them.  As the mom of a child who suffers from epilepsy and has seen it at its worst, I have to say, thank God they found something that works for them.  And for those who haven’t, I hope that some day there is a cure or at least a treatment that works for them.