Hi all, I am a bit concerned about my DS and his 'tics' and would like to hear your experiences, insight and advice. He seems to get 'tics' on and off. When is that Tourettes? Is it ever *not* Tourettes? If so, when? Could the tics be a symptom of other disorders? Do any of your children (particularly anxious 2e children) get them?

My kid seems to get "tics" on and off. Flicking fingers, shaking hands, right now he is making a slight noise (like a clicking) with the tongue at the back of the throat. Just when I start really getting worried, they go away... Also, each time he's been evaluated the psychs do not notice them or maybe they just happen not to be happening at the time of the eval or a little of both. I talked with his private OT place and hey HAVE noticed his tics and tell me that it is due to his bottleneck - his processing problems... They said they see it A LOT in the kids they work woth and that they do not feel it's tourettes but something along the lines of it gets overwhelming for him to not be able to get his knowledge out etc... and the tics are the manifestations and how he copes with that and not to worry. Also, they believe the tics have a sensory basis - it's a sensory behavior. That makes me feel better but as evidenced by my posting here about it I still go through periods where I get concerned it is something more.

I actually have an acquaintence whose child has tourettes. And, through her, I have been to some tourettes support group meetings, sort-of coincidently. By that I mean the meetings often have special speakers and workshops on things covering a wide range of special needs issues that are not just for tourettes - like "drafting ieps," "how a neuropscyh eval is different form a psych eval," "drafting trusts for care of kids special needs," etc. When I have gone to those meetings -there are often kids there that have tourettes (obviously) and I leave feeling like "okay I don't think my kid really has that" but he does have these tics on and off. I am not sure of the kids I have seen just have more severe torettes and that's why or if my kid really does have something different.

Anyway, at the last eval DS went through, I had met the neuropsych doing the eval previously at one of these meetings (the one about 'how a psych eval is different from a neuorpsych eval') and she asked at the end of DS's eval why I was "in attendance at a tourettes meeting? does DS have a tourettes dx or one of my other children" I told her it was merely b/c I have a firend in the group and she invites me to meetings that she thinks would be helpful for me. The psych said "oh okay I was so curious b/c it doesn't seem to me like your DS has tourettes and I was confused as to why you'd be at a tourettes support group mtg." I never mentioned my concern to her (I happened to be going through a phase where I wasn't very concerned about it at that time) and I could only surmise that she didn't see DS's hand-shaking (his thing that he was doing at the time) as indicative of tourettes.

My nephew (DN?) has a few tics and was seen by a neurologist last year who said that he doesn't have tourettes so it is possible to have tics but not tourettes. In DN's case none of his tics are vocal which was part of the reason he doesn't fit a tourettes diagnosis. The neurologist said that there are so many kids that have tics that they are now starting to think it is more normal to have them than to not. Now I'm not saying to ignore your gut instinct or to not investigate further but maybe that will help ease the stress while you search for answers. Good luck!

Yes, my DD had a throat-clearing tic for a while and then a funny thing she did with her eyes. Both are now gone. I spoke to her ped about it and she said it's fairly common in the 6-9 age range and didn't feel it was of concern. The tics were not extremely bad or really noticeable unless you were a parent, I think. I have since noticed other kids her age with tic-ish behavior.

I think the throat-clearing one had to do with allergies and then got out of control. She is now on meds for that. Also, she is a sensory-sensitive kid.

My ds11 has had tics on and off since kindergarten. Coincidentally, he didn't have them until after his first bout with Strep. (There's a theory that having Strep may cause tics. I think the theory is from New Zealand and has a name, but I can't remember it right now.)

He has them whenever he's excited (happy or nervous) and when he focuses on a symptom of his allergies. I used to tell his teachers. I haven't this year. It has never affected him socially and his teachers have told me that it's quite common with boys. If I draw attention to the tics, they seem to get worse. Sometimes I've advised him to find a different, more discrete, habit if he can, and sometimes that works.

I've been terrified to go down the road of seeing if it's Tourettes. They do subside or disappear altogether then come back again with allergies or stress.

I think PANDAS is what you're thinking of -
http://en.wikipedia.org/wiki/PANDAS

That's it. Thank you.

The wiki page on PANDAS is dangerously misinformative. Please see pandasnetwork.org for more up to date information.

Do you have personal experience with it?

Oh thank you all. I'm glad I asked, I feel better about it now. The occasional tic does not seem to be causing any trouble right now at all ... and these responses reassure me it can be just a developmental/transient thing. I guess I'll just wait it out... if it gets troublesome, disruptive, etc. then I can explore more. Thanks all.

The initial research on PANDAS was on kids with sudden onset OCD, usually accompanied by tics. I'm fascinated that I have never heard it mentioned in relation to OCD on this board, usually ADHD, or in this case tics. Also the posters who have talked about have discussed treatment with anti biotics rather than the autoimmune suppression therapy that I believe the research was done with?

I am no help on the PANDAS... It was mentioned to me when I first noticed a tic and DS was also at the same time exhibiting uncharacteristic OCD-like behavior and expressed concern (just by a friend I was complaining to, who actually is an adult with OCD) but my DS has never had strep so I never looked into it. He's only had antibiotics once at 3 years old for the only ear infection he has ever had.

Tics are actually very common among boys. If they interfere with his life or go on for an extended amount of time I'd speak to the pediatrician.

I believe that these are called transient tics- they are common in young children. My son went through 2 periods of "throat clearing, humming, and winking." They went away completely, returned, then went away again. I understand that they are only worrisome when they are accompanied by a cascade of behavior issues.

I hope this helps- my ds 11 has had ticks on and off since he was six. The same ones you described, plus a few more, eventually they became verbal. Well it turns out he suffers from severe anxiety and has ocd. The ticks are not really ticks, they are actually ocd symptoms. Just something to look into.

My brother was diagnosed with Tourettes..growing up, I don't remember him doing any of the things that you associate with Tourettes..but I remember his hands would shake a lot, especially when he was writing..I remember specifically, my stepmom saying one night, I wonder why he shakes like that, maybe I should have him checked out... and then we found out he had Tourettes

Actually, this was part of reason behind DS's first eval. He became very anxious in a bad school environment (his disability was being completely ignored and he was actually being shamed for it - even though he had a 504 no one had read it) and he started displaying OCD, phobia about germs, and some sort of tic /ocd thing by which he was refusing/incapable of swallowing allegedly fearing that whatever "disgusting" thing that was around would go into his body, i.e., if people were sick and coughing he couldn't sallow his saliva, if he smelled something bad, was in a public bathroom, near a trashcan, etc. I did explicitly express concern about tourettes in that eval. He was diagnosed with anxiety disorder. That whole episode and behaviors is entirely behind us now - all those sort of fears behaviors melted away. The next thing was flicking his fingers. He would do that when he was nervous or trying really hard at something it seemed. Like, he was struggling with reading and he would flick his fingers while reading (at other times too but I noticed it a lot when reading). That has mostly disappeared. The next thing was shaking his hands when excited or nervous... like shaking them as if they hurt. (my little brother did this for years as a child shake his hands when excited and it reminded me of that). When asked why he does it - he says something like "it just makes my hands feel better." It seemed kind of sensory to me. Sometimes he bites his nails (I do that at times though). Now it's the throat noise.

Incidently or not, he's fatally allergic to peanuts... Like has come close to death with his throat closing up. I often felt that was basis to the inability to swallow. Even now he will not eat anything if some near him is eating peanuts/peanut butter. He will go hours with eating anything due to this underlying deep fear he will someone accidently ingest the poison.

Does he still have that dx? Was it an accurate one do you think? Or did it turn out to be something else? How is he presently?