This past summer, some of you went on a journey with me and my lil guy, who is now 4.
We have been going through doctor after doctor, through different Neurology departments, different hospitals.
He has had this issue, it looks like a seizure, but we found out for a fact in August that it was NOT a seizure disorder. In fact, that was all they could tell me without a doubt.
They still did not know what was wrong with him, and because he's so young, just assumed he would grow out of it. Well, in fact, as he is getting older, it is getting worse.
It used to only affect his hand movements, where today, it affects every muscle group in his body including his face, which gets disfigured and he grinds his teeth.
As his momma, it breaks my heart to watch him, do this almost constantly every day, and not know how to fix it, or make him feel better. And it physically exhausts him.
Well I finally was able to get us referred to UCSF,in San Francisco. They are one of the most prestigious and well known hospitals any where. Well, we went down and spent the day there, and wouldn't you know, we saw the doctor for about an hour and a half, and she knew what was wrong with Levi, and how to fix it!
The other doctors wanted to push heavy anti-psychotics and things on my son, because they didn't know what else to do.
This child Neurologist who is an expert in her field said absolutely not! He has a condition called Stereotypy. Basically, the body has not learned how to control any form of excitement be it stress, happiness or anything else. She said we are each born with this, uncontrollable movements, but most of us by age 2 or 3, has learned to control these movements by outside stimuli. But Levi's brain just has a hard time communicating with the nerves in his body when to calm down, and so his body does it continuously, unless he is outside playing or deeply focused on something.
But the doctor said that we must create a behavioral plan, and as he gets older, he will learn to control these movements, and he will be able to control everything on his own, and so we are all working together, his teachers, the neurologist and I to come up with a good plan for my sweet Levi.
Please pray for this, and that things would go smoothly from here on out, so that Levi can feel like he has a normal childhood...and also for patience, for all of us :)
