Saturday, June 15, 2013


A lot has happened since our last update, so I will try to go over it all. In April we found out that Michael needed glasses as the poor kid was having trouble seeing things from a distance. He ended up getting bi-focals! Bi-focals! For my teenager! I never would have thought that he would need those so soon. Basically they are just so that he would not be forced to take his glasses on and off all the time since he does not need them to do things like reading. So, around mid-April he started wearing them, and I must say, he does look good with them :)
Around this time Nick continued to go downhill. He was having more jerky movements that no one seemed to be able to figure out what they were. I sent in a video of him one day to his school psychiatrist who had put him on depakote since his crash in January. He then told me that this was out of his realm of expertise and recommended we get a consult with a neurologist at the children's hospital 2 hours south of us. I called his pediatrician and she made the referral. We had our consultation on May 2nd. Great!

On the evening of May 1st we were preparing to celebrate Michael's 14th Birthday. He had a soccer game that night, so I had taken the night off of school and after his game we were going to have a little celebration. We had planned to take him to the store and let him pick out his birthday gift and then get something to eat. We had bought a cake earlier in the day and had saved that for after dinner that evening. Well, needless to say things did not go as planned. During the second half of his game, Michael fell on his arm trying to block a shot on goal (he was goalie) and broke it in two places. He spent his birthday evening in the emergency room getting a cast from his wrist to just below his shoulder. We did not make it home until close to midnight. The next day we had to leave the house around 8am to make our 10:30 am consult.

The neurologist listened to all of our concerns and we went over what Nick was doing. His twitching, his jerking, his teeth grinding, etc. He examined Nick and asked us if he was that "out of it" all the time. This neurologist also specializes in autism, so he is familiar with kids like Nick. We told him that this was Nick in one of his "good moods". He diagnosed him with 'spells' (via what he saw in the office, and what video we showed him) and ordered a 24hr EEG, MRI, and increased his depakote to 500mg daily.

The time came for the 24hr EEG and we once again had to drive over 2 hours away. I stayed overnight with Nick, and Mike stayed home with Michael because he was still in school. Nick had one big jerk prior to them putting on the leads, and nothing during the actual EEG. After they took the leads off, he had another one. Once again, nothing was caught on EEG, and we were discharged with orders to let them know if things changed. Two weeks later, things started changing. I sent in another video of Nick having a 2 min long staring spell where he was unresponsive. The next day I get a call from the Dr's office saying that he had reviewed my video and did see seizure activity. He ordered another increase in depakote. We are now up to 750mg daily on depakote, and I have sent in two more videos since then. One of Nick having some violent jerks, and the other one of his not-so-violent jerks. The neurologist has recommended we now follow up with an epileptologist as he could not identify what is going on. We have good days and bad days. I have started keeping track of all of his 'events'. Since the start of June, I have tracked 24 of these. They last anywhere from a few seconds (his quick twitches and jerks), to 3 minutes (staring, odd mouth movements, fumbling with clothes). He also has times where his head will drop and he will grind his teeth, we have also seen eye rolling. They are always preceeded by aggression, and after he has several big jerks in a row he will remain on thecouch for quite a while, and some times act as if he has a headache (banging his head on the wall) and we will give him some motrin/or advil. Most of them happen in the early to mid morning, and once again in the evening if he is getting tired. His school is also seeing the same things and have sent me some videos as well. I plan on taking all of the videos we have, plus all of our notes to our follow up with the epileptologist in July. We have the MRI scheduled for this coming Friday. The neurologist has diagnosed him with seizures based on what he has seen so far with the staring episodes, but we have no idea of what these other movements are.

Michael had his 8th grade graduation on June 6th, and Nick's last day was June 11th. ESY starts on July 1st and runs for one month. We found a house and should be closing on it later on this month, and will be moving in around August 1st. I completed my freshman year of college on the honor roll and have set up my fall courses. We are spending our summer afternoons walking in the park, going swimming at the YMCA, and we are also in the process of setting up home supports for Nick. It has been a busy few months to say the least. Not expecting things to slow down any time soon either!

We have had some good developments though! Nick has started basic pretend play!! He of course likes us to indulge him in such things as pretending the ottoman is an elevator and rocket ship, and he will lead us to it and say things like "Ottoman is an elevator" or "do you wanna do the elevator?" and we will pretend those things with him. It has just been fun to do that with him. No matter how basic it is, it is huge for him! He is also giving me kisses now. He will lean in to the side of my face and press his lips against my cheek (open mouth of course...LOL). So it is not all bad news here :) Hope everyone is having a good summer vacation and enjoying time with their families. I will try not to let it be so long in between updates from now on; but I can't promise anything ;)

No comments: