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Posted

I am new to the forum. My dd may be dx as PANDAS after having the dx considered at age 7 1/2 and now again. We just learned that a girl on her gymnastics team has had recurrent strep within her family (including her dog) for quite some time. Due to the holiday break, dd has not had gym for 9 days, PANDAS symptoms started to abate 5 days into the break. Gym starts up again tonight. She is on Aug XR (today is day 3 of 20 day dose). Is symptom abatement simply a coincidence or is the strep at the gym an issue?

Thank you for this group, I have learned a vast amount since I joined Monday night,

Mary M

Posted (edited)

Welcome. Some PANDAS kids will have a PANDAS reaction to exposure only without actually being infected. People will refer to their child as a "canary". Also, it has been compared to a peanut allergy. With a severe peanut allergy, a child may have a reaction by having it just be airborne. So, no, you may not be imagining anything.

 

Did your daughter start Augmentin XR based on the possible PANDAS dx or has she had strep recently?

Edited by Vickie
Posted

Did your daughter start Augmentin XR based on the possible PANDAS dx or has she had strep recently?

 

The abx were started due to titers being elevated and our ped considering PANDAS dx. Dd was rapid tested on Tuesday and that was negative but her titers from 2 weeks ago were both elevated (ASO=235 and AntiDNAse=600+ I can't remember the exact number--this was the number the ped was most concerned about). Titers were drawn again on Tuesday and ASO decreased slightly over the 2 week time frame but we don't have the AntiDNAse results back. Ped considered PANDAS 4 years ago and now we're back and the ped is sounding more confident about the dx. My dd has never had symptoms of strep but obviously has an antibody response to strep. She also has allergies and just needs to stand near someone with a cat to react so I think her body is proving it's heightened immune response in multiple situations. I just wish we could have put the pieces together sooner.

Mary M

Posted

If you haven't checked family members for strep, I'd do that too (even if none of you have symptoms of strep). Since the rapid came back negative, did they culture her? If not, next time do a culture as well. I have had rapids come back negative, but then I get a call a couple of days later saying the culture was +.

 

I'm happy your ped is working with you and prescribed abs even with a negative rapid. Ultimately, let the full picture (how the PANDAS symptoms are) be your guide if the antibiotics are helping.

 

I don't think summer break is coming fast enough for any of us!

Posted

If you haven't checked family members for strep, I'd do that too (even if none of you have symptoms of strep). Since the rapid came back negative, did they culture her? If not, next time do a culture as well. I have had rapids come back negative, but then I get a call a couple of days later saying the culture was +.

 

I asked the ped if we should all be tested and the ped wanted to wait for the culture to come back (yes, she did the rapid and sent it for culture). I guess I should push for family to be tested.

Thank you Vickie!

Mary M

Posted

Mary,

I would trust your instincts. My son is that way. Even on Augmentin XR twice a day, he will react to exposure. Last summer when we found out about PANDAS, we decided not to sign him up for wrestling again, you know, too much close contact, being cooped up in a stinky gym, not what we needed at that point. I've seen the coach disinfect the mat before each class, but still, it's just a microbe factory to me. My point is even if the child with the strep problem is treated, unless the gym is being super careful about how the clean, strep could be just about anywhere: tha mat, the bar, any equipment they all touch. So, we are sticking to outdoor sports, and even then, if we know someone is sick, we try to avoid them. We've let all our acquaintances know we have a strep problem, so they let us know if they have it.

Hope this helps,

Isabel

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