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Newbie with PANDAS


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I'm investigating potential pans/pandas with my 5 yo ds. My 12 yo ds has had tics for sometime so I'm familiar with that. 5 yo, though, had strep & Scarlett fever months ago, displaying tics, too, not necessarily at the onset but certainly before but nothing major. We do not have a genetic link as far as I know (maybe a cousin but who knows). Recently, more tics & inflamed tonsils. Neg to rapid strep not sure about the 24 hr one. Put on abx tues. tonsils still inflamed. He often has inflamed tonsils with no other symptoms now that I think about it. From what I've read on this forum, I'm not sure that he fits into this category. No real intense behavior change as many here have noted nor is there frequent urination. Could he still be pans/pandas? Not sure where to turn. Should/when can I expect to see if the abx make a difference? What else can I do? I am going to get his blood tested for allergies. We eat a clean diet.

 

Thanks for any advice.

 

San

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from your post it is not clear if your child has any psychiatric symptoms. he has tics but that's it, right?

so, what exactly makes you think it is pandas?

you may want to see the checklist, a part of pinned down material and do a self-assesment.

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are there any neurological problems with either of the kids?

how about blood test? have you done immune panel?

It's really hard to go on the info given.

one thing that can be done with tics is steroid taper.

if steroids make them worse, my understanding is that it is more likely to be Tourett's. if they go away temporarily, then likelyhood of PANDAS increases.

I would suggest to start with immune panel -- info blood tests to do is pinned, if I remember correctly.

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I would concur about getting immune responses to various pathogens looked at via blood draw. Strep and mycoplasma for sure.

 

I would ask if kiddo has any quirkiness what so ever???? At 5, it can be tough to decipher. We did not really "get it" with our daughter until post Pandas diagnosis and found she in fact did have lots of issues, but they were subtle. Were more pronounced after getting treatment and seen the VAST improvement. Especially trying to deal with 3 kiddos close in age made it tough to juggle and understand what was going on.

 

Clean diet???? I would investigate allergies and food allergies. Dairy for us was a huge one that had to be eliminated for healing.....esp in the short term. DD can handle dairy now, but during exacerbation, she could not.

 

Hope this helps.

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I would recommend skin testing for allergies, not just the blood panel. Your child may be highly reactive to airborne pollens, thus activating their whole immune system. Skin testing and allergy shots (very tiny needle) are still the gold standard of inhalant allergies. Also, I would wholeheartedly agree about testing for mycoplasma, lyme, bartonella, and other coinfections.

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