Yesterday was not so good.
First we took Olivia to the Opthamologist that we had taken Stephen to when he was first diagnosed. Back then he put dilating drops in Stephen's eyes and then wondered why he couldn't get near him to do an eye exam. Maybe because he was 2 and has Autism and after having those wretched drops put in his eyes everything looked even freakier than it already did. The guy was a butt. Nothing had changed when we took Olivia there yesterday. She has already been seeing my eye doctor for her yearly exams for the past couple of years but the geneticist that diagnosed her with Segmental NF-1 insisted we take her to see him. She wanted him to look for the Lisch Nodules and optic gliomas.
He walked into the exam room where I was seated with my hubby and Olivia was in the exam chair and said "How are we today ladies?". My hubby shot me a look and said to me under his breath,"I'm not the one wearing the pink shirt." He was very curt and without asking our permission quickly put the drops in her eyes and shooed us away to the waiting area where we waited for the drops to kick in. He did this to every single kid in the place. After looking at her eyes he said everything looked fine and her vision test was fine. He then told us that we could follow up with her regular doctor. This inflamed me! This guy's office is a half hour away and in the city I won't drive in so I had to make the appointment for a Friday when Pat could drive. Our regular eye doctor is five minutes from my house and isn't a jerk like this guy.
So her eyes were still dilated when she went to bed last night. Hate those drops.
So we went to BJ's after her appointment and got home and did some relaxing until Stephen got home. Everything was going fine until about 5:30, a half an hour after he had his seizure meds. He was sitting in his chair in front of the couch where Pat was sitting and they were watching "The Cat in the Hat". Suddenly Stephen put his hands over his ears and Pat called over to me, I was sitting at my computer in the next room and could see Stephen. Stephen then started to rub his earlobes. Something wasn't right with how he was acting but because of his Autism I wasn't sure if he was just doing this stuff because of his sensory issues. I got up and went over to him and he started touching his throat and gasping and clearing his throat and I was starting to think this could be the beginnings of a seizure.
I brought him into the bathroom and figured if it was a seizure he would start throwing up. He didn't. He started picking at his collar and turned slightly blue. I told Pat to check the time. If it lasted 5 minutes or more than we would have to give him the Diastat. Normally he would throw up and turn blue and go limp and be unresponsive until he came out of it. I went to lay him down but his body was stiff and Pat had to grab his feet and lift him up while I held him under his arms and we lowered him to the floor. While we were lowering him his eyes were going to one side. He didn't lay his head down easily and I grabbed a towel off the rack and put it under his head. All we could do was sit there and watch and tell him everything would be ok. He picked at the rug and we kept trying to get him to respond to us by talking or somehow indicating that he was coming out of it. About 1 minute before we would have to use the Diastat he started to repeat words back to us when we spoke to him.
We picked him up from the floor and had him sit on the couch. He started to fall asleep which is always what he wants to do after a seizure.
I called the doctor's office and requested a call from the doctor on call. He called me back and I told him what happened. He said it was definitely a seizure (tell me something I don't know) and I told him that the reason I was calling and concerned was that he has never had a seizure like this one. He said this would be considered a convulsive seizure because he was moving uncontrollably (smacking his lips, picking at his shirt and the rug). I found this unsettling. This might mean that there is a different part of a brain having seizure activity. When he was diagnosed with Epilepsy it was with complex partial seizures which is different from convulsive. I didn't go into these concerns with this Neurologist because I can discuss this with his regular Neuro on Monday. He recommended upping his dose of meds from 6 ml. to 7 ml. which I am comfortable with. I also told him that we had just seen his Neuro for a check up and hadn't gotten his levels checked and he recommended getting it done in two weeks right before a dose to see how low his levels are going.
I don't think it's any coincidence that he had a seizure a half hour after his evening dose. He last had a dose increase over a year ago when he had his last seizure. I am curious to see what the Dr. says about the fact that this was a different kind of seizure.
Have any of your kids had different kinds of seizures?