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OCD, Tourettes, PANDAS--please share experience and resources

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I've got a couple of kids really struggling lately. One may be experiencing PANDAS but in a family context where there is a genetic predisposition towards tics and OCD this is hard to tease out. The other has been dealing with tics and OCD for several years.

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There are docs (you might have to travel) who do genetics and tons of testing and then suggest supplements and interventions based on that and they specialize in ASD, the heavies. Would that be something you'd want?  Here's an example. https://sanctafamiliacenter.com

Edited by PeterPan

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Just now, PeterPan said:

There are docs (you might have to travel) who do genetics and tons of testing and then suggest supplements and interventions based on that and they specialize in ASD, the heavies. Would that be something you'd want? 

I'd be interested, yes. We've already done a lot of genetic testing but could use help with interpretation.

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DS14 has Tourettes. And I worry about the development of OCD, though we only have one relatively minor compulsion right now (checking locks at night before bed). In both of these areas, the symptoms are mild right now. His tics used to be worse, and I think medication is helping. He also had some behavioral counseling to learn a method for controlling the tics.

He got his diagnosis from a pediatric neurologist, but his pediatrican manages the meds, and a psychologist provided the counseling. If you haven't visited a neurologist yet, it might be a good first step.

We haven't done genetic studies for DS, but I agree that learning more about the info you have could be really helpful.

I'm sorry. Even when TS is mild (as for my son), it still is hard.

One thing the neurologist told us is that in about 1/3 of people with Tourettes, the teen years are the worst period, then it improves. In 1/3 the symptoms stay constant through adulthood. In 1/3 the symptoms get worse over time. I don't know if that offers hope or discouragement for you, and it may just be anecdotal, but I found it helpful to hear.

Edited by Storygirl
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My DD has PANS.  I will link the information that was most helpful to me in sorting this out.  PANS/PANDAS is SO HARD to figure out because it can mimic so many things.  It can be extremely sudden onset, or it can be more gradual if one illness triggers it but the child copes well enough to deal before the next onslaught to their immune system makes it worse of puts them over the edge.  One thing I tell other parents is to try some ibuprofen to see if it makes any difference.  As long is your child can take ibuprofen, give them a regular dose twice a day for a few days and keep track of any changes.  Improvement is a good indicator of PANS/PANDAS .  

The International OCD Foundation has excellent information that can help differentiate between Tourettes, pediatric OCD, and PANS/PANDAS:

https://kids.iocdf.org/professionals/md/ocd-or-pandas/ 

https://kids.iocdf.org/what-is-ocd-kids/pandas/

You can use this resource to find a PANS/PANDAS specialist:

https://www.pandasppn.org

This board has a lot of info and also has more resources for doctors:

https://latitudes.org/forums/

This video was incredibly helpful to me.  I almost drove my DD three hours down to Washington D.C. to see this doctor.  In fact, if we had not been able to find a doctor close by to help her, that's what I would have done.  

 

Edited by kristin0713
typo

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