What is Purple Day? So glad you asked. Purple Day is an awareness day. You've heard of them. Cerebral Palsy Awareness, Breast Cancer Awareness. Well that's what Purple Day is. It's an awareness day for Epilepsy. The idea is simple: You wear purple. People see a lot of people wearing purple and start to ask why all the purple. And then you answer, "To raise awareness about Epilepsy."
Epilepsy is one of those things everyone thinks they know about. But in truth they really don't.
First, epilepsy is not a one pony show. Most people think of epilepsy and seizures as the tonic clonic, what used to be called gran mal. My son has never had a tonic clonic. He has, none-the-less, had multiple seizures every day for most days of his young life. He has atonic (or drop) seizures, including both a simple head drop and a full body drop, tonic seizures (stiffening), where his muscles all tighten and his airway constricts, atypical absence, where he closes his eyes and appears to be daydreaming (atypical because he does close his eyes), and myoclonic, where his muscles will suddenly jerk. I further believe I have seen him have one Jacksonian, which consisted of a bizarre kind of shaking on one side of his body, though it was not caught on EEG and therefore unconfirmed. My son's seizures don't look like what people think of as a seizure, and they will tell you, "No he didn't have a seizure." But I know better. I know he did.
Second, epilepsy, especially uncontrolled epilepsy, is life threatening. The seizures themselves can be life threatening, from injury or loss of oxygen or cardiac arrest. But there is also a very dangerous risk of SUDEP, Sudden Unexplained Death in Epilepsy. This usually occurs during the night. So many people think that epilepsy is almost a non-issue...oh you get used to having seizures and you're okay when it's over.
Third, for some reason, (and this is our personal experience) people seem to think all children outgrow it. Many children do have febrile seizures or other unexplained seizures that do stop as they develop. But that is not true of all epilepsy. And certainly not of our son's epilepsy. Our son has an intractable epilepsy (just means it is difficult to control). He will not outgrow it. And your saying he will, while intended to comfort us, actually just sounds like you think we are overreacting to the situation. We are not. In fact, epilepsy does not have a cure. Wrap yourself around that. There is no cure. There is remission. But no cure. Jimmie will always have epilepsy.
Treatment is a guessing game. We (I mean the human race) have so little understanding of the workings of the brain that we have no knowledge of how epilepsy works. There are theories. But they are unproven. And we really don't know how anti-epileptic drugs work to stop seizures. Again, there are theories. But they are unproven. So doctors, neurologists, guess at drugs to administer. If it doesn't work, try a different dose. If that doesn't work, try a different drug. If that doesn't work, try multiple drugs. If that doesn't work, try a diet. If that doesn't work look at surgery, if surgery is an option. That isn't to say it isn't an educated guessing game. The doctors know what drugs work for a fair number of kids who have similar seizures to your kid. It doesn't mean it will work for your kid, but it's worth trying...There are no absolutes with epilepsy.
So with these generalizations in mind, I am asking you for a birthday present. Please wear purple on March 26th.
Happy, Happy Birthday, Darlin'!!!!!! Got my purple on for you both!! Beautiful and heartfelt post, as always. <3<3<3
ReplyDelete