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Need thoughts on current exacerbation


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18 YO son with PANDAS probably since infancy.

 

He was hospitalized with Eating Disorder one year ago.

 

He had been doing very well until about 6 weeks ago.

 

Our 7YO nonpandas son had what looked like scarlet fever rash all over and myself and two of our older kids had same rash but not over whole body. We all felt fine no fever no sore throat. Took 7YO to doc his rapid was neg and culture was neg.

 

during the same time the pandas son started saying he was starting to feel like the ED was acting up. He even said this feels so weird because I havent even thought about weight or eating since last year until now.

 

my question is should I have 7yO titers tested to see if he actually had strep

Do I bother testing 18yo who didnt have any strep symptoms and titers usually dont rise anyway.

Do i test any of us for other things

 

I would like to have proof that his current exacerbation of PANDAS ED was set off by something that one of us in the family had six weeks ago.

 

Thanks for any thoughts on this mess.

Melissa

 

 

 

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remember that after initial episode, any illness can trip off an episode. Was he sick at all? If your seven year old is okay to date, testing him would be moot. Does he suffer from allergies? This season was so bad, that I even felt sick from allergies...I would not be surprised that allergies set off an immune response that could set off pandas episode....just my thoughts...what is your usual course of treatment with your son? I would do that instead...hope this was helpful in some way.

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I would maybe get your 18 yo cultured at least. We just had a wacky strep in our house that reinforced how sneaky it can be...DD7 (PANDAS) had a rash, but no other symptoms, cultured positive for strep (despite being on full dose augmentin); tested my other kids (no symptoms AT ALL) just in case and one came back positive on the culture. I am guessing someone had (and possibly still has) strep in your house. Did your 7 yo's rash go away on its own? Did you culture anyone else? Maybe he did have strep and somehow his body fought it on its own, but your older son or someone else caught it and that's what's lingering?

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remember that after initial episode, any illness can trip off an episode. Was he sick at all? If your seven year old is okay to date, testing him would be moot. Does he suffer from allergies? This season was so bad, that I even felt sick from allergies...I would not be surprised that allergies set off an immune response that could set off pandas episode....just my thoughts...what is your usual course of treatment with your son? I would do that instead...hope this was helpful in some way.

I agree with this as far as the point that any illness can trigger an episode, but am going to suggest that if strep tests were negative go ahead and draw titers on your 7yo. They will be high if there was a strep infection. The rash could have been viral in nature, triggering a PANS episode unrelated to strep. For all three of you to come down with a new allergic reaction seems a little unlikely to me.

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Thanks for the replys. I took 18 YO to ped yesterday and they are running PCR strep test. We will know the results today. Doc thinks it combination of allergies, stress and exposure to whatever the strange rash we had was. I agree with the doc but he did not provide us with any solutions other than take him back to his therapist for a while.

I will be putting him back on antibiotics and ibuprofen. Hopefully this will curb this PANDAS flare.

 

Thanks Again

Melissa

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