Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, January 10, 2013


This has been a really long week and it's only partly done! Ok, I had to change the title of this post because I started writing it on Wednesday. LOL

Axel has been having episodes since the day we brought him home (December 2010 at age 10) that we have always chalked up to institutional or self-stimming behavior. When school started this fall, everyone decided these episodes had gotten more frequent and look a bit like simple partial seizures. We decided to get this checked out because they're affecting a significant part of Axel's day.

The first step is to take measurements of Axel's head, then mark and clean specific spots where the electrodes will be glued.

Then it was time to start gluing everything on. Axel was not thrilled with this process!!! In the institution, because of the way he'd been restrained, he developed some pretty awesome self-protective maneuvers using his feet. He put them to good use during this process. 

This is the "I'm not happy and not going to look at you any more." look. 

Wrapping everything under gauze so it stays nice and secure overnight. 

The wrapping is done. All the wires are plugged into a computer. 

The computer is placed inside the backpack so moving around our "hotel room" is easier. There is a telephone cord that tethers the backpack computer into the central system. This cord is about 20 feet long and allows Axel to move to the bathroom if needed, but for the most part he's supposed to stay sitting on the bed. There is a camera in the ceiling and they'd like to be able to see his face and eyes. 

Hanging out on the bed for a full 24 hours! There is a button hanging on the headboard that I push any time I see questionable activity, or the episodes we've been noticing. I noticed several within 10 minutes of starting the test. Every time the tech would come into the room and ask what I'd noticed, so that he knows what to watch for on the video. After awhile, once they were familiar with Axel, they didn't need to ask anymore.

It was a long night sharing that queen-sized bed with Axel. The kid flops all over the place like a fish! At home, about every 20-30 minutes he starts banging his head on the mattress, and each time lasts about a minute or so. (this used to drive me crazy hearing him do this all night long. He even did it when he had the halo screwed into his head! Finally a few months ago we changed sleeping arrangements and replace all our 1970's hollow-core bedroom doors with solid oak doors. This is allowing everyone to sleep much better at night without having to hear the banging) Axel didn't head bang at all during the study, but he did sit up and rock several times during the night. Rocking is a very common post-institutional behavior. We haven't seen him do it for a long time so I was surprised it happened on this particular night. Now, this was NOT a sleep study, which monitors the quality of his sleep. This was an EEG only, which is looking for seizures, and the overnight is to rule out nocturnal seizures. It's pretty clear that Axel's sleep is seriously disturbed and he doesn't get much quality sleep at all. We'll be doing a sleep study soon to address this. I could have had the two tests done at the same time but that would have required coming up with the idea beforehand and not in the middle of the night as I watched him rock in the dark.

Today (Wednesday) the neurologist's office called and said they were able to see all the episodes I had marked on the read out. There are definite differences in his brain waves at that time, but hey are not seizures. Instead they are "stereotyped movements", which is a fancy way of saying "just" self stimming behavior and nothing to be concerned about from a medical standpoint. We're not at all surprised that's what he's doing, as it's pretty common post-institutional behavior, but we needed to rule out that it was true seizures.

From a behavioral standpoint they ARE concerning because he completely checks out at this time. He looses chunks of time and takes a few seconds to re-orient when he comes back to us. The next question is what, if anything, do we do about it? The sleep portion is just one issue, but what about during the day when he completely checks out? I'm not really sure the best way to handle this.

Axel is on another planet so much of the time that it is sometimes frustrating. He is a very smart young man, but there are today...that make me scratch my head. It is winter in Minnesota so Axel goes to school with boots on his feet and shoes in his backpack. Today I got a text from his teacher saying he had come to school with two left shoes.

How could this even be possible? At the moment he only has one pair of shoes that fit him. His orthotics are in his shoes.

We texted back and forth trying to figure it out. He had on one size 4 boys shoe, a gray high-top tennis shoe with thick, fluorescent green laces. Those laces match his jacket and his backpack. The other shoe he was waring was an 8W low-profile shoe (just happened to be a woman's shoe)  that has pink piping and gray laces. It was MY shoe!

Now, Axel has very good problem solving skills, but this morning when he (apparently) couldn't find one of his shoes, instead of looking for it he just grabbed the next gray one he could find. It just happened to be mine, several sizes too big, and included the orthotic I have for my feet which is very different from his orthotic.  To Axel this solution would work just fine. I keep going back to the fact my shoe was huge  on him, the orthotic probably felt awful! He ended up spending the day wearing his boots. I bet tomorrow he brings HIS shoes to school.

So, thankfully seizures were ruled out, and now he knows he has to bring HIS shoes to school. All we have to do is figure out how to stop him from leaving our world 20+ times per day. Believe me, the term ADD has been tossed around plenty!

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