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taraph

Suspecting PANDAS, not sure where to start?

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Hi there. My son is 7.5, and has had on and off tics (mostly vocal, with occasional blinking) since he was 4.5. They wax and wane and the first few bouts of them I didn't identify as tics, but associated them with allergies (sniffing and throat clearing, mainly). As he has gotten older, they seem to be getting a bit "worse," though I think they're still mild in the scheme of things. 

I can't say for certain if they started after a bout with strep but I CAN say that he is prone to strep - he has had it at least 3 times a year since he was 4 (he had it 4 times last school year) and several of those times it has been back-to-back episodes (showing up again a week or so after he has finished his antibiotics from the first round). They definitely flared up after he had it this spring, and didn't calm down until he had a stomach bug in September that weirdly seemed to "reset"

him. BUT...they have come roaring back in the last few days and while he doesn't have strep symptoms, several kids from his class have been out with it recently, and I know it is rampant now. 

He also has issues with anxiety and probably mild OCD behaviors (anxiety/intrusive thoughts and maybe some sensory stuff). He gets frustrated easily and can lash out/be aggressive but only at home, no issues at school/in public. We have no family history of Tourette's (but do have anxiety). 

Of note: he also had a staph infection from an infected bug bite (pre tic behaviors) and had infant botulism as a baby (received an immunoglobulin as treatment and full recovery).

My gut says I should have some bloodwork done to check for PANDAS markers but I don't know where to start. I was thinking of taking him for a strep test this week, he hasn't had a fever but did say his throat was dry and he has been very clingy to me the last few days. Where do I begin? What do I demand they test for?

We are in Bucks County, PA - I saw a few docs listed that are PANDAS-friendly on one of the PANDAS sites but I don't know about our pediatrician. 

Thanks for any advice. 

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I would start with a throat swab, and abx if positive. 

I would also highly recommend Blis K12 from the company NOW.  It is a oral probiotic that would crowd out the strep bacteria from the oral cavity.  My kids like the taste..... and their behavior is much better while on it. I know someone whose kids really did so much better tic wise with this vitamin.

 

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Many thanks, I've got an appointment with his ped this afternoon and ordered those probiotics. 

One step at a time, but if the swab is negative and he culture is negative, is it worth pursuing further? Would I try to get in with a PANDAS specialist as a first step or would I work with the pediatrician on this (assuming she is open to testing)?

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3 hours ago, taraph said:

if the swab is negative and he culture is negative, is it worth pursuing further?

I believe it is.  The false negative rates for swabs (i.e. test says negative, but you are actually positive in the throat) could be as high as around 30%, especially if the swabber is not a pro.  The false positive rate (test says its positive, but he really doesn't have it) is much much lower (around 5% or so - depends on method, and user), so one positive in the presence of a couple of negatives means the positive should rule.  I don't know what the false test rates are for the culture, but undoubtedly the false negatives are higher than the false positives, because many different mistakes can lead to a negative, whereas most everything has to be right for the positive.

You can buy a strep kit, and swab whenever you are most suspicious.  There are other places to swab (perianal strep is common), so could be negative for that reason (that is outside the false positive rate above).

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Strep is not the only definitive. we struggled with test, after test, after test for many years with "an unknown autoimmune illness".  Even though DD had 7 of 7 clinical symptoms for pandas, it wasn't until we had a the Cunningham panel test done, that a diagnosis of pandas was made.  Then again we weren't looking for a pandas diagnosis, we just wanted our dd to be treated for a pathological affect rather than useless  "mental" treatments.

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