Aidan had the 2 hour EEG yesterday which he had to be sleep deprived for. It was interesting trying to keep him awake. He did well during the test and finally had a "seizure" episode for them to record. The also were videotaping him during the test so that they could compare the EEG with his actual response.
The neurologist called early this morning to talk to me about the results and he said he can't say for certain that these are or aren't seizures. They aren't occuring in the part of the brain that epileptic seizures occur. These are happening deeper in the brain and although there is a spike on the recording at the beginning of the episode, his activity actually slows down after the initial spike.
He said this very well could be Aidan's brain's way of "waking up" from all of the drugs that he had in his system. It makes sense to me because the episodes have progressed from being very short, almost unnoticeable startles to involving his entire body. He jerks his arms and legs, his head turns and his eyes jerk in the direction his head is turned. It's alarming to see.
So, we're supposed to be trying to give him a dose of ativan if he has a bad episode and see if that helps calm them. He is generally fairly agitated in the evenings but usually a dose of tylenol will help him settle down and go to sleep.
Today has been a rough day on both of us. Aidan did fine this morning at his hyberbaric treatment and even on the way home, but once Russell and the nurse got him in the house he started fussing. He hasn't calmed down for more than 10 minutes since 11:30 this morning. He's cried and cried and fussed. I don't know what's wrong with him. We've given him tylenol, gas drops, ativan and extra clonidine and he still hasn't settled down. He's so tired but he still is fussing. He'll start to settle down and this his little face scrunches up and he starts crying again. It's like something is hurting him and I just can't figure out for the life of me what is wrong.
I'm at my wits end this evening. I feel absolutely useless. It's so easy for everyone around me to act concerned, but when things get bad or they've had all they can stand to see Aidan the way he is, they just walk away. It must be so nice to just turn your back on it and pretend he's okay. Aidan isn't okay! He quit being okay 3 months ago when he managed to drown in a pond with 6 capable adults around. He was supposed to be safe! He was supposed to be with people that were watching him and playing with him. I'm so damn angry right now and I'm sick... I'm sick to death of what my life has become. It's a nightmare! I thought things were going to be getting better- that Russell and I would finally be able to get out and get our own place and we'd have our little family and everything would be great. Boy was I ever wrong.
I don't want to drag everyone down with my pity party. Everyone wants to know how Aidan is... well, here's a day in the life of Aidan. It's a particularly bad day and one I wish would end soon. Sorry for being bitter, but I can't help it.