For people who don't know anyone or have never experienced a seizure, they are pretty scary regardless of the degree of severity. In fact, they are so scary that as an adult who has witnessed seizures in my child, I have horrible dreams about them. When its your child that has the seizures, you are in constant fear that at any moment it could all happen again. Its a fear that rears its ugly head every time there is the slightest fever, the littlest bit of teething. But what is really scary, is that they can come on without any warning signs like a fever. They just happen. They don't just happen when you're in the comfort of your own home, nope they can happen at school, social events, walking from one room to the other. They just appear, and there is nothing you can do to stop them immediately.
Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".
Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.
Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!
The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.
For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.
Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.