Well, I got the school to jumping now. After I sent a letter to her guidance conselor with copies to the head of homebound and health services and her principal. She has gotten tapes of spanish class and they sent her home some slides and labs. Now was that so hard? nah! I don't think I was being unreasonable.
Thursday afternoon she had a long seizure, the longest ever. I gave her diastat at 5 minutes and she didn't come out by the time we got to the hospital 25 minutes later. She was vomiting, it was coming out of her nose. She starts out in complex and goes to genralized if she stays in it long. She was rigid and my husband was not waiting for a stretcher. He grabbed her and her rigid and runs in the E.R. He almost hit her head on the counter, but in all fairness he didn't. Anywho, I went to the children's hospital, they were great. They admitted her and she stayed in for 2 nights. I took her to children's so the only real pediatric neuro in town would have to see her. He took her off the Keppra since my event log showed no improvement on it. He increased the trileptal and took her off lexapro and adderall until we get to see him again.
So far, so good no events yesterday or today, but that's how she is. Sometimes nothing for days. I'm praying this is it though. The trileptal seemed to be helping until this incident. But the other doctor had her on a higher dose at night than during the day. IT may have been "wearing off" by 5:00 since she takes her meds at 6:30 that's when she seized this time. By the way, one of the doctor's "residents" had never seen a seizure that was not generalized and asked me if I thought she might be faking. I'm so tired of hearing this. Can you make your pupils different sizes? Her's are after most except the long ones where she goes generalized. I agreed to take her to a conselor but I'm doing it because she is anxious all the time. She hasn't even asked to go back to school this time. She was so upset the last time, the kids were acting like she was a freak or at the very least like she was interupting class. She is SO not an attention seeker. I once had a teacher actually say she had no personality in a meeting where I was trying to get her help for her reading comprehension. I raised my eyebrows and he "clarified" that she would just sit there and listen and never ask questions or draw attention to herself. I'm disheartened.
The neuro said he has not seen her seizures and that she may very well be having epileptic and nonepileptic seizures. He said a lot of people do. I just want it to stop......
They are having a meeting at school to try to classify her as otherwise health impaired. I don't really understand, but they say it will help her get help in class and out. She is able to do the work unless she has a really bad day, and then she catches up as soon as possible.
Man, I'm so rambling. Moms.....can't help but being moms.
Hope everybodys doing well
Beth B. in TN