Friday, January 11, 2008

Okay, don't freak out. He's OKAY, I promise.

The Bear had two seizures yesterday. They were what are known as focal seizures, which means they affect a portion of the brain, rather than the whole brain as in a generalized seizure. This is how the day went down:

I heard him cry Thursday morning right around his usual time, but I immediately noticed that it was a really sad, quiet cry. He usually calls for me, babbling loudly, but this was a cry, like he was hurt or sad. I went in there, and he was sitting down at the end of his crib, all slumped over. I reached in, and he didn't move. I started gently patting his leg, thinking that maybe he had been woken up by a noise and was still drowsy and not quite with it yet...and he still didn't move. For five minutes - literally - I sat there and rubbed his back while he sat, slumped over, his head falling down toward the mattress and his eyes blinking slowly, like he was about to fall back asleep. Then, he would look up at me with a totally blank look on his face and his eyes wide open, just staring at me. No recognition. His eyes were glassy and unfocused, staring right through mine. It's like he was just turned off inside. It was scary. Then he would slowly lower his head again and do the slumping/slowly falling thing, then look at me with that look, then go back to slumping. Finally, he kind of raised his arms up and I lifted him out of the crib. He snuggled up on my shoulder, didn't put his thumb in his mouth (which is also really weird, as it's in there 24/7 unless he's eating), and just lay there, totally limp and heavy for another 5-10 minutes. He *always*, and I mean always, wakes up ready to go and play, and eat a billion pounds of food. He didn't want to eat, nothing, not a thing. I finally offered him some teething biscuits, and he uttered his first sound, like a "uh" with his mouth closed that he does sometimes, and he took them. After a minute on my lap, he started to "wake up" and finally, it's like he just clicked on, and took off to play with Sir H and acted totally normally from there.

Then, morning nap time rolled around, and when he gets tired, he won't slow down, I just have to keep my eye on the clock or watch him closely for an eye rub or a yawn, and it's time. Our routine is to take him to his room, swaddle him on Henry's bed, and put him in the crib with some water and put his blanket on him, turn on his aquarium, kiss his forehead and leave. He hasn't been able to go to cosleep since he was about 6 months old. This time, he just kind of wound down. I looked over and he was standing there, with his shoulders slumped, and his face had that blank stare again. His eyes were huge, and no expression on his face. His eyes watched me as I walked over, picked him up, and he slumped on my shoulder with that same limp, loose feeling he had in the morning. No thumb. I went to my bed and I lay down with him on my shoulder, and he stuck his thumb in his mouth and just lay there totally still and quiet, and in about 10 minutes, he was asleep. He slept for about an hour, and woke up alert and fine, and I put him in his crib and he went back to sleep for another hour. Awoke fine.

Since then, he's been rocking and rolling along like he always does. I talked to the developmental pediatrician today, and she diagnosed him as best she could, without having seen it, but said she was as certain as she could be that it was two separate seizures. We are supposed to call a pediatric neurologist on Monday, and she said he would most likely want to do an EEG. I have no earthly idea how they're going to get this kiddo still enough to stick sensors on his head and monitor his brainwaves!

I'm having a hard time not simply sitting there staring at him and watching him to make sure he's okay. She doesn't expect another seizure this weekend, since he had two so close together, but she instructed us to head to the hospital where he was born if he did have another one, or if he shows any change in his color, straight to the ER here or call 911. There's absolutely no way of knowing if this is an isolated occurence, or if it could happen again. Some kids have one seizure, then never have another. Some kids have them regularly until they grow out of them on their own at around five years old. Some kids continue to have them through adulthood and are then diagnosed with epilepsy.

I keep thinking of all of the autism-favorable traits he has, and now we have another one to put up on the board. I know I can't continue to think of that, I want to enjoy him and not worry, but that's what this blog is for, no? To spill my thoughts and share my joys and fears? So...there it is.

2 comments:

Katie said...

Danie - I am so sorry that you had to go through that with your precious son. It is not a fun ride when you know as a mommy that something is wrong and you can't fix it. I will give you some encouragement - my sister's son - Ethan - had febral seizures when he was little ( I think 4) and then they just dissappeared. He has not had anymore at all. So your little man can outgrow this. Also, have you thought about the possibility of it being night terrors? I say that just because it sounds like it happened when he was tired and A Bear used to have those. Ask the doc and please let me know the follow up. We will be praying for you and your family. Love you!

Danielle said...

Thank you so much, Katie. I'm so glad A Bear is doing better. I'll update after I talk to the neuro today. Thank you so much for the encouragement about Ethan - it's always wonderful to hear about kiddos who have something like this happen and it's a totally isolated incident. Interesting about the night terrors, I'll be checking into that as well. Love you too!