Friday, August 5, 2011

Update on Mikester

So, I just realized that I never updated anyone on what's going on with Mikey.

We had his second MRI at Cape Fear at the end of last month where he was knocked out using that stuff that killed Michael Jackson.  After our last experience with the MRI, which for the record scarred both of us for life, we were not looking forward to another one.  Mikey had nightmares after the first one and asked me why he had to have one.  I explained about his tics and tried to tell him that we were trying to find out why he has them, and if we could help him.  He promised me he would never do it again (tic I mean) if he didn't have to do the next MRI.  Heartbreaking I tell you especially when you know that he can't stop it.

Anyway, he screamed like a banshee getting the IV put in.  It didn't help that the first vein blew and they had to put a second one in his hand.  A very unhappy Mikey reluctantly watched cartoons while waiting for his turn.  Then a very hysterical Mikey had to be held down on the bed by me and several nurses.  I do believe I have hearing loss in my right ear as a result.  And guess what - when they started pumping the meds into him, his vein blew again, so they had to do a third IV.  Lovely I tell you.  Screaming, scared child equals a very upset mother who was handed kleenex and sobbed hysterically as my (eventually) sleeping child was wheeled into the MRI.  

After sobbing for 30 minutes in the waiting room I was ushered back to find Mikey waking up.  Now, at least this part was remotely funny.  The stuff coming out of his mouth was just hysterical to include him yelling at the kid next to us getting an IV, "Don't let them do it!! It hurts!!!" He remembered nothing about the MRI and couldn't understand how he had gone into the tunnel but couldn't remember it at all.

His results were pretty much normal.  It was noted that he had some kind of blood vessel bleed in his brain, probably when I was still pregnant with him, but that it was unlikely to have damaged him in any way, or be the cause of his tics.  So the Choreathetosis is not likely.

We have seen the Child Neurologist at UNC Chapel Hill.  He's reluctant to call what Mikey has as Tics - I guess what Mikey does makes him somewhat as an enigma.  But he classifies it as some kind of a hyper-kinetic movement disorder.  He doesn't recommend any meds, and because Mikey is so young he could benefit from just learning other ways of working around it.  Like putting his hand on his hips when he's going to shake his hand. He also recommended getting Mikey a scooter to improve coordination and balance, saying that Mikey no longer has an excuse why he can't ride a bike without training wheels.  He just has to get over it.

And the part I liked best was that the Neurologist didn't recommend a diet change.  A lot of kids with Aspergers are put on Gluten Free, Soy Free, Organic yadda yadda yadda diets.  Why it may help some kids who have gastro problems (which is common with Aspergers, but doesn't include Mikey) and those special diets may help them.  He said that with Mikey already having to deal with Aspergers and a movement disorder, by making him different in another social way (eating is a huge social thing) would be cruel.  Can you imagine him being invited to a party and fitting in, and then not being able to eat the food because it's got gluten/sugar/dairy...Yeah, that does seem mean.

But anyway, both kids have been doing swim lessons, and Mikey has improved so much!!  He jumps into the pool now, and can even swim small distances by himself.  I am so proud of him, and he's proud of himself too.  He's earned his water gun, and can play with the other kids more.  And it's given him confidence that he can do things that he didn't think he could do...with a little practice of course!!

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