A new Chapter

Our son must have thought that life was getting a little bit boring, so he decided to spice things up to add a little more excitement to it.  Last week we began a new chapter in this crazy story we are writing.  John is now being treated for seizures. This is not something I ever expected to happen, but it has.

It all began last Tuesday, at school. I got a call from his school nurse some time after lunch. We always joke when she calls because we talk so frequently. But when I answered I could tell she was not in a joking mood. She told me that she got called down to John's class because he was not feeling well. When she got there, he was on the floor, lying back against his teacher. His body was completely limp and he was not responding. Also, his eyes were constantly moving back and forth. She kept trying to call his name and get his attention, but he wouldn't respond. She said he was so pale that he looked like he wasn't breathing. She was just about to call 911 when he finally snapped out of it. Then he was acting like his normal self. So she called me instead. She said the whole thing only lasted about 30 seconds. I have never seen him do anything like this, so I went to the school. He of course was acting normal. I knew he had a long day on both Sunday and Monday, so I thought he was just tired. I took him home and put him down for a nap and he slept for 3 hours, which is unusual. He was back to his normal self when he woke up. He went back to school Wednesday, and I called his neurologist to let her know what had happened. She wasn't totally convinced it was a seizure. But she said even if it was, she wouldn't consider medication after just one. So she ordered a few tests and I got them all scheduled over the next couple of days.

He was at school on Friday morning, and right about 10:00, I got another call from his nurse. She said he was doing the same thing again. This time she was trying to pinch his fingers but he wouldn't respond to that.  When they pinched his arm, he pulled away, but he was still out of it. So I went to the school and was able to talk to his teacher. This time he was standing in his stander when it happened. He started with a cry and then his whole body went limp. She took him out of his stander and layed him on the floor. After the nurse called me, his teacher picked him up and carried him to the clinic. She said about half way there, he snapped out of it and started to smile. This time it lasted about 1 minute. I got John home and called his doctor again. She decided she wanted to see him right away.

So I took him down to TCH where Tommy met us. We got down there at 1:30 on a Friday afternoon, so you can just imagine what it was like. She arranged to have a couple of the tests I had already scheduled done while we were there. She walked with us to cardiology where he had an EKG and a 24 hour monitor put on. Because he got so pale during the episode, she wanted to make sure he wasn't having any arrythmias that were causing him to do this. Of course, being my son, that is a high possibility. After cardiology, we went up to neurophysiology to have an EEG. Dr. H met us up there and talked with us a few minutes while they were setting up. She said the eyes moving back and forth made her think it was a seizure and since he has now had 2, she wants to start him on medication for it. She also said that some people can tell when they are about to have one, and because he cries right before it happens, that might be his way of telling us it's coming. John never, ever cries unless something is wrong,so there is obviously something going on inside his body that he knows is not right. Tommy asked why she thought he would suddenly start having this now. She said that a seizure is basically any disruption of the normal electrical activity in the brain. John's brain has always been slightly underdeveloped. There is something in the brain called myelin which is kind of what conducts the electrical activity. Because the myelin in John's brain may finally be developing to a point where the electrical activity is conducting better, this may be what's causing the problems. It's a good thing that his brain is developing, but at the same time, we may now be finding out about the seizures. So now we have started the medication. She said that the only side effects we may see are irritability and increased sleepiness. Yesterday, he took a 4 hour nap, and then I had to wake him up this morning at 7:30. We aren't sure yet if it's from the medicine or if it's because we had company this weekend and he was just tired. We are at therapy now and then we will be going to school. Our boy is a trooper and he is just taking it all in stride.

So now we wait for results from our tests to see if there is anything else we need to add.  Even with all that is going on, he is still the happiest kid I know.  It is an extreme pleasure to be that boy's mommy.

Please pray for us as we adjust to this new reality.  Also pray for John as his body has to adjust to this new medication.