Update on Tourettes DX — The Bump
Special Needs

Update on Tourettes DX

DS was dx three weeks ago, with tourettes, adhd, gad and ocd. The dev pedi saw him a total of 30 minutes and recommended therapy at Seven Counties. We took DS in, and they did a 90 minute eval, and they said there was no tourettes, or adhd, but PDD-NOS and sensory integration disorder. MH and I disagreed with the dev pedi, but they are a dev pedi, so we took it and worked out accepting it. DS was taken to a neuro to be eval'd for a brain injury/lesion from a traumatic birth. The neuro stated she saw no tourettes, but did see "stereopydy" being the cause of his ticks. Pending an MRI to rule out lesions and such, and an EEG to rule out seizures...we are a step closer to gtting DS treatment. I will take PDD-NOS over tourettes, as I just don't see tourettes. He has the motor ticks, but no vocal ticks. He has social issues, sensory issues and such...but not tourettes. 
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Re: Update on Tourettes DX

  • So glad you are getting closer to some answers and a treatment plan for your DS. Good job, mama!! :)
    .
  • image-auntie-:

    It can be difficult to parse the difference between a tic and a stereotypy. In medical parlance, a tic is a purely involuntary movement and a stereotypy is a ritualistic movement (also called a self-stimulating behavior or "stim") which is intentional and is pleasing the person. Sometimes parents describe awkward, complex and twitchy sounds and movements as tics when the child is actually stimming and can/should be redirected or stopped. It's critical to know what you're seeing.

    The PDD-Nos will subsume a lot of the behaviors you describe like the ADHD and OCD. Or he may have these conditions as comorbids to the PDD-Nos. It's important to know, because meds are often the most effective part of the tx plan for either of these conditions.

    Thanks for the update mama!!!  And I'm so happy for you.  I was just telling my DH about your situation in fact.  This is really great news.

    Auntie--thank you for this as well.  Very helpful.  I've thought about DS1 and whether he may have tourettes and this is very helpful.  He's been doing it a bit more and now I'm wondering if it is more of a stim.  For instance, yesterday we were in the car and truthfully he got some sugar in him (sorbet from Whole Foods).  And just all of a sudden on the way home would just let out this scream.  It was so bizarre.  It's almost like he couldn't help it but also wanted to do it.  He did it about 3-4x on our hour drive back home.  He would flay his arms a bit too but it seems like it's more of a "I'm going to crawl out of my skin" type of thing.  I feel so bad for him when he's going through it.

     

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