A Childhood Epileptic's View of the Disease

Epilepsy, a form of seizure disorder, can be an extremely frightening and difficult diagnosis, especially for a child. I was diagnosed with the disease at age nine, after having a single grand mal seizure, and I can say that firsthand. However, along the way I had many very supportive family members and doctors, and I learned quite a bit about it. Here are some suggestions for overcoming the obstacle, both for parents and younger epileptics.

First of all, both parties must learn as much as they possibly can about the disease. Many believe that seizures can only manifest themselves as falling on the ground and shaking. This is only one kind of seizure, and not even the most common, in fact. In my ten year battle with epilepsy, I only had a single one of those types. Other kinds of seizures that I had included being unable to speak, paralysis, extreme dizziness, extreme tiredness. An epileptic must be very aware of their bodies and what is going on in their mind, especially considering that anything could be a seizure. All of the above symptoms manifested themselves on the EEG tests as abnormal brain activity.

Epileptics should also familiarize themselves with tests, and, if the child is young, the parents should be even more familiar. The various batteries of tests can be extremely frightening to a young child, and a child will be far happier if they know what to expect. A parent should tell their children the details of the upcoming tests and well know what tests frighten their children the most. I am deathly afraid of MRI tests, even today, and there was an occasion where a hospital refused to knock me out for one because we had not given them prior warning. Please, parents, make sure that your doctors know how to treat your children during these tests.

Again, parents, you are more important than you could possibly know in supporting your children through this process. If your child has to be an in patient of any length of time, please stay with him or her. I can see, without a doubt, that I would not have survived my in patient time (a total of four or five months over ten years, with one occasion of two months in a row) if my mother had not stayed with me for the entire time. The stress is enormous.

Also, I learned, you must stay open-minded. My battle with the disease finally ended when I had three brain surgeries in a three month period. When I first heard that this was a possible cure, I put my foot down. I said, "absolutely, no way are they carving into my head." I have now been twenty-six months seizure-free and I couldn't possibly be happier about it. I attribute this success, once more, to my parents being willing to override what I said. Had I made this decision, I would still likely be seizing several times a day.

And finally, one more word of advice: Don't ask your doctor to keep the pieces of brain that they remove. They'll think that you're weird. ;)