EEG and other tests

A lot has been going on with Conner these last few months. Backing up about a year and a half, Conner nearly passed out at school. We took him to the doctor and they checked him for everything. They said to take him immediately to the emergency room. Well, it did happen again about 6 months or longer later. By that time, we had talked to several doctors about it and were not as concerned. It seemed to be related to going to the bathroom. But at a routine visit, the GI doctor referred us back to our old cardiologist just to be sure. So we went to see the cardiologist in March. C's little heart is perfectly healthy. Good news. But to be sure, she referred us to a neurologist.

In April, we saw a new neurologist. We hadn't seen one in a few years. This one was nice. She observed Conner's behavior and asked him a few questions. She observed behavior indicative of ADHD which we agree with. We had put it off a while, but decided that we might try something for it. Because of his history and the recent "fainting", she wanted us to do an EEG first. So in May (it takes a month to get in to everything), we had the first hour long EEG. C did really well for it. He had to lay still for 90 minutes which was a little challenging but he did well with a movie on. Then we went back for our results and found out that it was abnormal. Not great news. So, the doctor had us go for an MRI (last one was at age 2 when he was diagnosed with CP) and a 24 EEG in the hospital. That happened in May as well. The MRI was challenging mostly because he had to be sedated and because of his crappy lungs and asthma, it just gets a little complicated. He had to have lots of  breathing treatments that day and ended up with a fever from the contrast. He woke up very crabby. Other than that, he did well for the test and thankfully there were really no changes since his last MRI. Although it is very abnormal, it is not getting worse or changing. So I guess that's good. The next week, we went for the 24 hour EEG. Conner did better than I ever expected. He was thrilled to have a "movie day" at the hospital and was curious about all the doctors and nurses. The only bad part was when they put on all the electrodes, but once he was all wrapped up, he did great. The hospital was great and we had excellent nurses. The results were the same as the one hour test. Abnormal. We don't really have a specific diagnosis. Just a seizure disorder with no outward symptoms of seizure. So no real diagnosis. No real treatment. And really now we are very hesitant to treat the ADHD because those drugs can make it more likely to have a seizure. Not the results we were hoping for. Since school ended, Conner has been on a seizure medication to try to quiet the area of his brain that is affected. We haven't noticed any positive changes and we are getting discouraged. It really sucks.

The part of his brain that is most affected from his prematurity is affecting his motor, speech, and impulse control. And now it's causing this seizure activity.  Sounds about right. And we really don't know what to do from here.