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sammie96
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19 Dec 2013, 3:39 pm

My 10 year old, who I strongly suspect has Asperger's, has been doing what I assumed to be visual stimming. But I've been reading that visual stimming is usually very subtle - he's making constant eye rolling motions, looking way under his eyelids so you can only see the whites. Is this something more?



OliveOilMom
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19 Dec 2013, 3:48 pm

I used to do that when I was a kid. I'd also squinch up my eyes really hard when I blinked sometimes, over and over and over. I just liked doing it is what I remember, but now that I've gotten dx'd (in my 40's) I'm thinking it was a stim. I'd also do that rabbit wrinkle thing with my nose and mouth a lot too.


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sammie96
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19 Dec 2013, 5:35 pm

I used to do that, too. The eye movements have been going on for about 4-5 weeks, and have gradually increased - he's doing it 8-10 times a minute. I can't find anything about that being a "normal" stim. Taking him to the doctor tomorrow morning.



chris5000
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19 Dec 2013, 6:18 pm

it could also be a sign of absence seizures, is he alert when hes doing it?



sammie96
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19 Dec 2013, 6:33 pm

He's been alert the whole time. No change in behavior. I've done some research - it looks like it's rotary nystagmus. He's been able to do all his normal activities. I just hope they can treat it - he said it does hurt sometimes, and I'm concerned it's going to cause permanent damage.
I should have taken him to the doctor earlier, but I believed it was visual stimming. It's gotten more severe lately :( He's had to deal with so much :(



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20 Dec 2013, 6:03 am

My daughter does something like this usually when she is close to a melt down. We don't see full white on her eyes but they definately roll around a bit and go all squirrelly. Her eye lids flutter too... its almost like extreme tired eyes only she is definately alert because she about the flip the table over and lose her $#@!.



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20 Dec 2013, 11:48 am

I hope it goes well at the doctor, and they can help him if it is something troublesome.



sammie96
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20 Dec 2013, 12:04 pm

We went to the doctor this morning. Of course she blamed it on the Benadryl he takes to sleep. Every time I bring him in with something odd, they blame the Benadryl. Too much Benadryl causes tremors - not rhythmically rolling eyes! They're never willing to look into anything more complex than that. Most of the providers at that practice know nothing about autism, let alone PANDAS.
Last night I took matters into my own hands. I believe he had PANDAS 5 years ago (his doctor refused to culture him for strep); I was concerned that it had been reactivated. I had a full course of amoxicillan from one I filled recently but never used. I started him on it last night, and today the eye-rolling is almost gone!
Maybe I shouldn't have given it to him without the doctor's "permission," but I couldn't let it continue and become more severe. If he DOES have PANDAS, then he could suffer even more neurological damage than he already has. We've suffered mightily from incompetent/uninterested doctors. My daughter almost died at the age of 2, because the doctor refused to test her for diabetes. Of course she did have it, and ended up in DKA. I've been right about my son's OCD, my sleep apnea and my autism. Each time I've had to fight doctors who dismiss and ignore me.
Sorry for the rant...my boy has enough to deal with. OCD/ADHD, anxiety, and (very likely) autism. Plus all the family stuff and worries about school.



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21 Dec 2013, 4:05 am

Sammie, can you switch doctors? I believe I would. And probably file a malpractice complaint.



sammie96
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21 Dec 2013, 10:21 am

I'm looking for another practice to switch to - I haven't been very happy with my care at that clinic, either.
It would be way too late to file anything against the previous doctors - the diabetes was 12 years ago, the strep was 5, and I can't prove he had strep at that time; he wasn't diagnosed until 5 or 6 months later.
I've always feared being too pushy with doctors (have AS myself, which doesn't help), labeled as an anxious, overprotective mom. Those fears have led to a lot of unnecessary suffering for my children.
I don't care what any of them think anymore. I do have a medical background, and as a person with AS I am very good at noticing small changes in my children. I do a lot of research on my own before going to the doctor (unless it's something acute, obviously), and I have been right on target the majority of the time.
Maybe that's why the doctors don't like me. They like to be the ones giving the diagnoses. Well, if I didn't have AS I probably would have become a doctor. Se la vie...