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Which bugs other than strep cause PANDAS to go downhill?


Guest fr88

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Not to be taken the wrong way, but I sure @A#$&-ing wish I knew :blink: In our case, the initial insult MAY have been strep, but mommy-of-the-year was not taking dd to docs to avoid over-use of antibiotics :wacko::unsure::angry: That started with some germ-type ocd and a bit of separation anxiety and hyperactivity. Then a few tics started a couple years later, likely after walking pneumonia---but myco. p was negative. Nonetheless, it was a loooong respiratory illness with repeated sets of fevers. Finally, a high fever for one day (not strep---we don't think) and the tics went wild. Following this, within a week or two of tics starting, 3 months of exposure to staph impetigo, with no treatment until after the 3rd month........I know, I know......sigh....shoulda-woulda-coulda.....

 

I really hope the new name for pandas takes away the big STREP connection, as I truly believe that it's NOT just strep at work here.

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My son has most of his exacerbations with sinus infection and / or sinus inflammation. He has never had elevated ASO, though he has had elevated DNASE B, so I don't think it is strep, but it could be. It could also be staph (last sinus surgery found staph in there), or it could be fungus (previous sinus surgeries found fungus in the sinuses). . I can only surmise that it is probably s. pneumoniae because his titers are low and this is a frequent cause of sinusitis.

 

I also think my son responds to mycoplasma exposure. He has been exposed 3 times in the past year to people with walking pneumonia and each time he had a PANDAS flare up, though he did not catch the mycoplasma as he was on antibiotics (no increase from baseline mycop titers afterwards; no clinical signs of mycop)

 

I also believe he reacts to allergy flare ups. Right now he is waiting for allergy testing and has been off allergy treatments and anti inflammatories for about a week. I took him to the pediatrician today because his throat is hurting and PANDAS symptoms are rising. Pediatrician said it looked like allergy flare up before I even told her we had taken him off meds!

 

hope that helps!

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my son's doc thinks we have it narrowed down to sinus infection as it is the only thing that has been tracked with symptoms and infections at school. We think strep in the sinuses. Each time, there was strep outbreak at school. The last time however, his teacher had pneumonia as well. It is almost always sinus infections he gets when i see symptoms.

 

HOWEVER... he had his acute relapse in 09 following what we think was walking pneumonia (Mycoplasma)

 

just so impossible to really know for sure...

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I think this depends on how early pandas was caught. My DS6 had mycoplasma pneumonia in November. His pandas was caught early (diagnosed within a week) and he has been on Augmentin since July. He had a slight pandas flare after the pneumonia for about 6 weeks. On the other hand my DS8, who had severe pandas for 2.5 years before diagnosis, reacted to his brother's pneumonia and is still in a flare. He did not get the pneumonia but he is a wreck. Even though he did not get the pneumonia, he was put on zithromax for three weeks as a precaution. He is getting another ivig in about a week.

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Strep caused severe exacerbations. Allergies caused a severe exacerbation when they surfaced very early in recovery. Viruses and allergies that occured later in recovery caused more mild setbacks. Currently,my son does not react to any other bugs or triggers. However, I know in my heart strep would still do it for him.

 

Which bugs have caused a severe PANDAS exacerbation in your experience?

Edited by Vickie
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H1N1 did a number on us. It was actually when DS was first symptomatic. Although, the doctors aren't sure because he did have a postive strep culture about a month later. The understanding is that most people who had issues iwth H1N1 actually caught a secondary infection - so it could've been that he got strep right after.

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Hi - at recognised onset, our dd tested +ve for beta hemolytic NOT group A (but we think we just missed the Group A). She also flared badly when she had flu, probably H1N1 but not definite.

 

What seemed to be common colds have caused exacerbations, as has an acute allergic repsonse to a food.

 

We believe the initial trigger was strep but now it seems as though, depending on how full her immune system "glass" is, she will exacerbate in response to virtually any immune provocation.

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