David update

For the past few weeks David has been struggling. It is so hard to know when he is having seizures, but he seems to have a pattern of symptoms that let me know that something is going on . He has been doing a lot of nighttime vomitting which is often a seizure symptom for him, and so I have been watching him very closely. On Wednesday, as it was time for David to get on the bus, he started to cry and say he wasn't going on the bus. It was late, and I had very little time to convince him, so I just spoke to him quietly, and held his hand while we walked out the door and down the driveway. As he got on the bus, I watched him pull his hood over his head and punch himself in the head 3 times, and then slam his head into the bus window.

I wanted to run after the bus, take him off the bus and hold him tight, but the bus had driven away, so all I could do was call his teacher and let her know that I was worried about him. She promised to check on him and suggested that maybe he needed a break from the bus.

For the past few weeks David has been struggling at school in the mornings. While he has come a long way in being able to write letters and words, he goes from being unable to write at all in the morning from 9-10 or 10:30, to being able to write a full sentence by the time it is afternoon.

I know I would find this maddening- to not be able to count on my body to do the things my brain tells it any time I want would be beyond frustrating. Unfortunately, we don't know what is going on in David's head, and we cannot yet find any medication that has helped him to have more consistent skills throughout the day.

The teacher was hoping that by driving him to school we might be able to see if changing his routine would have any impact on his skills. Thursday morning I drove David to school and used that opportunity to talk about the bus. After lots of questioning, David said that he didnt like the bus because the aide holds his legs. He wouldn't/couldn't give me any more information, but I knew I had to figure out more about what was going on.

I contacted the head of transportation who watched the video of the bus, he confirmed that David was struggling, but also said that he was proud of all that the bus aide was doing to help David. The head of transportation invited me to come and see the video to see if I had any thoughts for how to help David succeed. My heart aches for what I saw of David on the bus, and my fondness for the bus aide grew! I watched video of 2 mornings of David on the bus, his body tight, fists clenched, making unusual sounds, and banging his head with his fists, slamming his head into the window, and growling. Throughout all of this, the aide supported David. She put her hand on his head when he went to bang it into the window. She told him he would hurt his head. She rubbed his back and talked quietly to him, all while also holding a conversation with the other child on the bus.

The video of David has my heart broken. I don't know what was wrong with him while he was on the bus. I know that the sounds he was making and his body posture were concerning. I know that he "didn't seem to be present" but I can't say for certain that he was having a seizure. He hit his head with his fists, and slammed his head into the window for what seemed like forever on the video. He growled, and made gutteral sounds and didn't speak much the entire time.

Today he came home and he and I had some time alone together. I hoped that I could use this time to talk to him about the bus, but he refused to speak above a whisper to me. We ended up snuggling on the couch and playing a game on the IPAD, but he struggled more with the game than I had expected and he seemed to become frustrated- David is a wizard at puzzles, but today he couldn't seem to put the 3 puzzle pieces into the puzzle on the game.

Then as we were leaving to pick up Matthew and Jacob, David had an accident, his whole body was tight which made it hard for him to walk into the YMCA to get Matthew. We then went to his school to pick up Jacob who was on a playdate and David refused to get out of the car. He sat in the car for 30 minutes while the other kids all played and laughed. Whenever I opened the car door, he quickly closed it again. He looked drawn and exhausted. As we left the school, I found David had shredded every book we had in the car. He didn't seem angry, just simply methodical in the process of shredding every single page of every single book.

After we got home I found that David had another accident, so we did a quick bath and he got ready for bed. He was quiet, but seemed more alert than he had been for the past few hours.

I am happy that it is the weekend and I will have lots of time with David to observe him and monitor him to see if I can gain more insight into what is going on. The head of transportation is going to monitor David all of next week on the bus. It is so hard to not be able to determine what exactly is going on. There is no way to know what is happening inside his brain, and no way for him to tell us.

We are seeing the neurologist again next Friday, but even the neurologist is unsure what exactly is happening. Treatment is more about trial and error, all with the possibility that whatever treatment we try will have no effect and that whatever is going on will simply end on its own.