Aytpical Abscence Seizures; Epilepsy

Well hello there and good day to you all! Things have been happening in Will's life I'd like to sort out a bit and write about. It's a whole big thing. Let's get right to it.

I had briefly mentioned in a previous post how Will tripped on a rug and got a big gash in his forehead that required stitches. Well, a few weeks after that Will fell face forward onto the pavement and hit his mouth. He hit it so hard his front tooth suffered some nerve damage and turned gray a couple weeks later. I'm happy it didn't fall out at least. And then not long after that in the middle of December Will was standing next to me and suddenly seemed to lose muscle control and smacked the back of his head into a corner of a wall. This injury was so scary with the amount of blood. I rushed him to the emergency room in a panic and he had staples put in to close the wound. It has since healed up nicely thankfully.

These are just the major falls with injuries here I'm highlighting. I will tell you there have been countless more falls like this. I always thought Will had poor balance, but at this point it was getting out of control. I had no idea what was going on, but I knew it wasn't right.

Thankfully I had the sense to call Will's neurologist and she immediately said to me, "it sounds like he is having drop seizures." She had me describe how it is getting worse and what they look like. What I have observed happening is that Will will be going about his normal business and then suddenly his eyes roll a bit and his head seems to fall. Sometimes he falls all the way and sometimes he catches himself. It all happens very fast, like 3 seconds at the most. So the neurologist prescribed him a medication to help with seizures. I was very apprehensive about this from the get-go. These are the kinds of drugs a person takes for life. They are expensive and synthetic. But also I am a believer in modern medicine and so I said okay, if it helps I am glad to try it.

This new medication I felt worked for about two weeks. He stopped dropping and he seemed overall better with his balance. But then the drops started again. I called the doctor and she said to give him a stronger dose of this medication. So we tried that. And it was horrible. The kid would not sleep for the life of him. He would fall asleep but be up banging on his door, playing with toys, being all kinds of crazy in the middle of the night for hours! He was so tired in the morning. We all were. We live in a small ranch style house and those kinds of noises are impossible to ignore, even with ear plugs. You can feel the thumping of items against the walls and doors. And also with this increase in meds I one day observed more than 30 little drop seizures. It wasn't helping anymore. I called the doctor again and said this isn't happening. He needs something different. She decreased back down to two pills and added another drug. Cool. Now we have to force the guy to take two medications. But I saw a huge difference in seizures with this new drug. I only saw him drop once in two weeks. And he was back to sleeping fairly soundly which was fantastic!

I also mentioned in a past post that Will would be going back to Children's Hospital for a 24-hour EEG to look further into his abnormal sleep-deprived EEG and now to look at his drop seizures. Well this happened and we found out even more about Will's brain activity.

First of all, this was not a pleasant experience. I brought Will at 11 o'clock in the morning and went through the whole rigamarole of getting his history and all that. Then came time to hook him up to the EEG. They put little electrodes all over his scalp and covered them with a bandage so he couldn't pull them off. Will hates being examined or touched on his head or being forced to lay still. He screamed and cried for 45 minutes while the tech attached him to the EEG. At the same time one of the male nurses came in and tried to put an IV in his arm, all while 4 grown women were holding his little 3-year-old body still. Will's arm was bleeding everywhere. The IV slipped out because he was sweating so bad from the fight. He bit one nurse and scratched another. He was looking into my eyes like, 'why are you letting them do this to me?' It was awful. I was in tears for him by the time it was done. Anyway, the stupid thing with the IV was enough to make me want to leave right then and there. And the male nurse stomped out and said something along the lines of 'I'm not going in there again.' Nice, guy. Thanks a lot for being a d**k at a children's hospital.

So uh anyway... He's all hooked up and falls right asleep, exhausted.

There is a video camera in the room that records him and the parents are supposed to push a button whenever we see what we think is a seizure. He had been tapered down on his new med in order to get a semi-accurate reading since it was working so well.  Mick and I probably pushed the button 8 times or so while we were there. It was a bit boring for Will and hard to keep him in the one room the whole time. He doesn't like to watch TV or play games. I brought toys and books and things he likes to play. It was okay. Mick stayed overnight with him so I could come home and get Colin to bed and school the next day. It was great teamwork on our part!

The results from the EEG actually showed Will is having atypical absence seizures, not drop seizures like we all thought. His brain is disorganized with very frequent spike and wave discharges. He has been diagnosed with epilepsy. Atypical absence seizures present in Will as staring, possibly losing muscle control (dropping), but during these events being somewhat responsive. He doesn't remember anything that happens during them. I don't know what he thinks happens, to be honest. I'd really like to know what it's like for him. Anything he does during these events will not be remembered. The doctor said it happened constantly while he was hooked up, sometimes in clusters and when he was asleep.

After I heard all this I began my online reading and researching. Now that I know what they look like, I can see they have probably been going on much longer than I knew. I feel really guilty about all this. I wish I would have known about these kinds of seizures sooner. I did have therapists and doctors tell me the staring is just part of who he is. He has autism and autistic traits sometimes mimic that of seizures. Nice. Well we were all wrong, weren't we? But now we know I guess.

Here's a video I took of Will in June 2012, so nearly two years ago. I am certain this is a seizure. I could cry. I could have helped him so much sooner.

I hope with the right medication we can get Will's brain more organized and settled down. Maybe he will be able to learn and retain information easier. I hope all our therapy the last few years hasn't been a waste.

Here's Will a couple weeks ago having a seizure. This was when his med was being tapered for the EEG.

They are hard to distinguish from his regular behavior. I wonder if it's just been going on so long, though, that I just expect him to act this way. Since starting the meds he seems much happier and is playing really well. He is interacting and just much happier! He still has his stubborn and screamy and bitey moments, but I know that has more to do with his lack of communication than seizures.

Now you guys are updated. :) Thanks for reading.