Here’s a fairly detailed report that Alexandria just finished writing from her perspective, for a school project that was due today. The information is both informative and timely, with some of her history and what’s coming up next too!
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Seizure Report
by Alex Corley
A seizure is a sudden burst of electricity in your brain, very much like a tiny bolt of lightning. This electricity is a signal that causes your body to feel different, or makes your body do things that you can’t control. Sometimes the electrical signal only reaches part of your brain. Then a part of your body, like an arm or a leg, may move on its own. If the signal goes all through your brain, you may shake all over or may fall asleep for a short time. The whole seizure is usually very short—only a few seconds or perhaps a minute or two.
Imagine a room full of mouse traps. Instead of putting cheese in the mouse trap, we put a ping-pong ball on each trap, and there’s not a bit of space in this entire floor where I haven’t put a mouse trap and a ping-pong ball. What if I just throw one ping-pong ball into that room? What’s going to happen? It’s going to hit one, which will bounce, hit two, which will hit four, which will hit eight and before long, the entire room has got ping-pong balls flying in it. That’s a little bit like what happens with a seizure. Irritation in the brain may start at one area of the brain and then spread until it eventually takes over the entire brain.
Doctors aren’t always sure why kids have seizures. Some kids have seizures by hurting their head in a bad accident. Others have an illness that injures their brain. For most kids the doctors cannot find out what causes their seizures. My seizures started when I was one year old. The doctors couldn’t figure out what was causing my seizures. But recently they found a mass in my brain about the size of a ping-pong ball right here (point to my brain).
There are two main types of seizures. The most common type is called a generalized seizure. Someone who has generalized seizures may fall and black out. The muscles will twitch and jerk. They usually last for several minutes. People usually feel tired and sleepy when it is over. The second kind of seizure is called a partial or focal seizure. It involves a small part of the brain and may cause someone to just stop and stare. My seizures are like the generalized seizures. I fall to the ground and black out. It lasts for about a minute, and when I wake up, I feel very tired, and very hungry too! The doctors don’t know why if feel hungry after my seizures.
The good news is that most seizures can be controlled with medicine. People can do most activities as anyone else. For some people, medicine does not work. These people may decide to have brain surgery. Doctors can sometimes remove or repair the part of the brain that sends mixed up signals. In two weeks I am going to the hospital for some tests. They will decide if I am going to have brain surgery to stop my seizures. The vagus nerve stimulator (VNS) is another type of treatment. The VNS battery is a little larger than a quarter. The doctor puts the battery under the skin in the chest. The battery sends a signal to the brain through the vagus nerve, a nerve in the neck. The vagus nerve is one of the twelve cranial nerves in the human body; it is like a computer system for the brain. The signal from the VNS can help stop or prevent seizures. When I was in the hospital a couple months ago, they replaced my VNS, and it has helped me.
People who take seizure medicines have to take them every day, or even many times a day. Imagine that the medicine is putting the seizures to sleep inside your brain, but they don’t go away. If you forget to take your medicine, the seizures might wake up. Even if you don’t have any seizures for a long time, you still have a seizure disorder, so the seizures probably would wake up again if you stopped taking the medicine. (show my medicine) This is all of the medicine that I take every day.
Seizures can be very scary. If you wake up after a seizure and everyone around you is worried, you may worry too. But the truth is that kids almost never die from having a seizure. Most seizures last just a few minutes and kids are back to normal after a short rest. Last week I went to Wal-Mart with my mom. We were trying to find a card for my great-grandmommy for her birthday. I was looking for a card in a different isle than my mom, and suddenly, I had a seizure and fell to the ground and hit my head. It made a huge bump. After I woke up, I heard everyone saying, “Help! Please help!” A lady called for help and my mommy came around the corner to me. People were scared and they were calling 911. I was OK once my mom was with me, and I didn’t have to go to the hospital. Usually I can feel my seizures coming on, but for the past few days, I haven’t had much of a warning.
Most kids with seizures can ride their bicycles. They just have to be sure that they always wear a bike helmet and stay away from dangerous places. They can also do lots of other sports. They just need to be a little more careful than other kids. Some people think that kids with seizures shouldn’t go swimming because they might have a seizure in the water and drown. But if you don’t have too many seizures it should be OK for to go swimming in a pool if an adult is watching closely.
I don’t really like having seizures. But I’m so glad that I have good friends that love me anyway. I’m glad that God keeps me safe. I hope one day I won’t have any more seizures.
But most importantly, we believe this is a part of God’s plan for Alexandria, and our beliefs are supported by much advice from all kinds of specialists and very educated neurologist and neuro-surgeons who have studied Alex’s case for years.
