Okay, so we saw the super duper movement specialist and this is what he said. Kylie is diagnosed with Stereotypic Movement Disorder. The stereotypies are the movements that she has been doing, and he explained to us what those can look like: the head back, the waving the hands together out in front of her (kind of like in an excited state), putting the hands behind the head, and playing with their ears.
Here is a link that explains a bit more about this stuff...http://en.wikipedia.org/wiki/Stereotypy. (Yes, I know it is Wikipedia, but that is the best I can do right now...trying to make this quick so we can get back in the car).
Here is a just a bit more of what we learned today. There is no treatment for this. These movements can get worse, stay the same, or eventually go away. She can develop tics later on. 95% of kids with this are either mentally retarded or autistic. He believes that we can currently rule out the mental retardation since she understands a lot of things (50-60 commands or words)....although, there is still a chance she can develop it as she comes across more challenging things when she gets older.
He believes that she would probably be on the mild end of autistic spectrum disorder, due to how she prefers to play independently, likes things a certain way, and how she responds to new people. This is also subject to changing and/or improving with time. He has put in a doctor's order for Behavior Management to help with her social skills, as it is an issue associated with the autism.
He also put in an order for Speech Therapy, since she does not say any words.
I think that is about it for now. I will be sure to update an clarify things once we get back home and settled in.
Oh...on a side note, the doc we met with today said that one of our hospital's back home (KU Medical Center) wants to start up a Pediatric Neurology Department and the head guy there keeps calling him to come on board. We did our best to encourage him to do so, since it is so much closer to home, but he didn't appear as though he was going to make the move. Who knows though.
K, thanks for following and stay tuned for more info to come.
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5 comments:
Well...I've never heard of Stereotypy before. But it seems like our kids can never have something normal. Or known.
It sounds like you guys found a good neuro fit. And have some answers...
(((((((((hugs)))))))))
Don't let all the "what ifs" of her future consume you. I know how HARD it is. But she's beautiful and doing really great right now. Try to enjoy that.
...danielle
This is a lot of information to sort through and take in. I'm not sure what else to say. Thanks for updating...I have been thinking about you all a lot today. I hope you have a safe trip home.
It's a step forward with an answer. Good luck as you travel this new path.
danielle, so true...our kids do seem to have things that are not normal and often are not really heard of.
definitely hard to not wonder and think of all the "what ifs" of her future. the doc reminded us of how blessed we are that this is all she has as a result of the IS. just gotta work on managing the new things and enjoy the moments.
elaine, yes...it is a lot of info to take in. a lot of new info. just trying to absorb it, understand it, and figure out what to do first.
jen, we are definitely at ease with having an answer...just need to work on adjusting to this new path and following it through to the next one.
The slide show are very cute. Just remember god put her on earth for you to love and enjoy. you guys got a cutie. The Hunley's send our love and prayers.
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