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Thread: Back after several years! Things were good, not so much now...help!

  1. #1

    Default Back after several years! Things were good, not so much now...help!

    Hi everyone, I'm back after several years. My son was diagnosed with ASD when he was 3 1/2 years old. He was speech delayed and we got him the services right away and responded very well. We did the GF diet also because he was diagnosed with Celiac disease when he was 2. All seemed to be going well. Has an IEP and is currently in a regular classroom with monitoring only. Grades up, on the Honor Roll. Speech and expressive/receptive language skills normal. Social and has a few friends at school(but not at home). Almost recovered. He is now 11 and in 6th grade middle school, and over the past year he has been developing some very inappropriate sexual behavior that is coming out as vocalizations and gestures. We are trying to figure out if it is some kind of autism related stimming or something cormorbid. The stuff he blurts out is very lewd and he always says it with a strange seductive voice. He will dangle objects in front of his private area that look phallic. He also does a sexual moaning sound constantly. And to top it off, the hyperactivity is out of control. It is very disruptive to the family and we are all at our wits end. We haven't heard from any school faculty in regard to this behavior, so we assume he is curbing it at school for the most part.

    From the outside, it could easily look like sexual abuse, but he is at home almost 24/7 due to increasing agoraphobia and rarely leaves the house unless it is to go to school or the store with me. I know for a fact that he has not been exposed to anything sexually in the home.

    Some of his behaviors almost remind us of tics, because when he acts out sexually, he will sometimes also engage in alot of repeated throat clearing as well. Sometimes we also see blinking.

    We are in a crisis because the behaviors just keep getting worse and worse and our insurance is terrible and we cannot find a specialist to take him to. We are considering getting a full neuro workup done, MRI, EEG, to rule out anything biological. And if nothing shows positive, then on to the possibility of this being a comorbid mental illness like bipolar.

    Anyway, I'm glad to be back and would like hear your thoughts or suggestions in regard to what this could be. Or if anyone is in the same boat. Take care!

    Amy

  2. #2

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    Just wanted to let you know that tics and compulsive behaviors can be caused by post streptococcal autoimmune reaction, or an autoimmune reaction to other infections, particularly if the onset was fairly sudden. For whatever reason (probably immune related stuff), kids on the spectrum seem more prone to this reaction.

  3. #3

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    Thanks for the reply. Interestingly I was reading about PANDAS last night. I had heard of it before, and when I googled autism and tics, it came up. So is the fix just a course of antibiotics? It didn't really mention much in the way of treatment. I don't recall my son being sick or having a sore throat, but he's always prone to viruses and has allergies too so it's highly possible he was sick and it was overlooked. The question is, how do you find a pediatrician who believes in this syndrome? We have a DAN doctor we are setting up an appointment with next week. Do you think he would be familiar with PANDAS?

  4. #4

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    Most pediatricians have no idea about PANDAS or how to treat it. Your DAN doc may have a better idea about it. Probably would be a good idea to get him swabbed for strep ASAP, even w/o symptoms. It is very common for PANDAS kids to not show typical symptoms of infection-wanky immune systems.

    Here is a good website to get info from many parents who have dealt with, or are dealing with post-infectious autoimmune issues.
    http://www.latitudes.org/forums/index.php?showforum=17

    Many of them have seen ASD symptoms in their children who have this disorder. They can direct you to docs who can help in your area. Some are working only w/ natural and alternative treatments, some are only using standard medical treatments, most are using a combo. Its a very active and supportive group over there.

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