Sunday, March 20, 2016

Survived the 24+ hour EEG

(I can't believe we got through this!)

Max's Dr. scheduled Max for a 24 hour EEG. It ended up being a 27 hour EEG. I wanted him to have this test because Max loses coordination during certain exercise. We notice that if he's jogging around, he loses coordination in 12 minutes. If he is walking around, it's more like 30-40 minutes. We notice that he walks into things, is harder to talk to, and gets a very bad headache.

I asked the Dr. if Max could walk around the Hershey parking lot for a while, and then maybe we could check his brain function. No, they do the EEG this way.

It was more involved than I thought. He had a typical EEG here last year, which lasted 1.5 hours. The 24 hour one requires you to carry the device around. The glue they put on your head is really heavy duty. It's a more intense procedure as they don't want anything to fall off!

Max immediately hated it. They told us he should be fine without his head wrapped up in gauze which was a blessing. I brought along his baseball hat, which worked enough.

With his Muscular Dystrophy, the device in the backpack weighed too much on his shoulders. He is pretty sore now from carrying it around. He hated it if the leads felt like they were dragging. I would pick them up and rest them on top of the backpack. I needed to help him get in and out of the car, help him lay down, help him sit up and strap the thing back on. I also checked to make sure it was "on" every few hours.

And there was the journal, where I recorded what he was up to at the time, and if I noticed anything. If I did, I had to press a red button which will print on the report indicating that I noticed something at the moment. The Dr. can see if it corresponds to an abnormal response on the brain wave printout. My goal was really to tire him out, in an attempt to recreate what we see. I pressed the button a total of three times and those times occurred after we were done at the museum, when we were done shopping at KMart- both times he began to walk into me, and lastly when he got into the car the last time but stopped a bit too long to ponder how he would get into the car and had trouble following my direction (which was odd because he had already gotten in the car several times that day with it on.)

We first went to Friendly's which was awkward for him. Then we headed to Hershey Story where they let him in for free. (Rather nice to be let in free when you are a patient from Hershey Medical Center and then you walk around the museum and learn how nice Milton Hershey really was :)

We then went to a Mennonite run bookstore in Ephrata which has some unusual homeschool supplies (I hope to blog about that later). Then to the library, then to two KMarts. By then he was quite done.

He was annoyed at home, but rested on the couch and played computer games. He slept fine, somehow, all night. He woke up and got through the next morning, and then we happily got back to Hershey and got that thing off!

Earlier in the week, we had gone to Lowe's and thanked the General Manager for supporting the MDA by selling shamrocks.

We posted the photo on the Harrisburg District MDA page on facebook. The office fedexed Max a shamrock t-shirt for thanking Lowes! We got it right before we left for Hershey to have the EEG taken off.

After the clinician took device off and all that entails, I gave Max the t-shirt. He was excited and relieved. He happily changed into it, and went home so happy to have it all over, comfortable as can be.

And now we have realized that next weekend is Easter. And we have Another! Hershey appt. this week- the physical for MDA camp!...Our busy life...

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