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My 10yr old son was Dx last year with PANDAS. We have fallen into a sort of rhythm with it. We have school sort of kind of on board, the doctor orders blood work whenever I ask and I can usually see a flare at fifty paces and each time I've asked for bloodwork it has always proven to be an exacerbation. He never has symptoms for strep, never has a fever but always has positive ASO and Anti Dnase B and occasionally MycoP.

Now his 8yr old brother has had ups and downs all year. His teacher loves him so it isn't a personality issue but he will go from working very hard and giving his best to barely working, tons of referrals to the principal for effort and homework issues. He has always been a quirky kid, my sick one until things changed for my oldest a year ago. He used to have sensory issues about touching certain things, would only wear pants with elastic waists but this has not been a issue of late. He shows no evidence of tics or OCD like behavior that I've noted. This is what has caused me to hesitate to look into PANDAS. I didn't want to be the mom that sees PANDAS everywhere. But the increased issues in class, many behavior consequences that seem to bother him but don't stop him from getting into the same trouble, issues with sleep, frequent crying jags over nothing and irritability in an otherwise kind kid forced me to ask dr. to do titers on him. I took him to therapy for dealing with crying earlier in the school year but saw no improvement.

So I didn't sleep last night so on my break today I ran to the hospital to get preliminary test result. (I'm a fanatic about getting my own copies and checking results often before I hear them from the dr.) The only thing back is the ASO screen. It was positive so then it was sent out for the titer. So with screen being positive would you say he has it? Positive ASO for my other son means treatment but he has tics and maybe more classic PANDAS symptoms. I'm still on the fence about my youngest. Would you consider him as a PANDAS kid?

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My 10yr old son was Dx last year with PANDAS. We have fallen into a sort of rhythm with it. We have school sort of kind of on board, the doctor orders blood work whenever I ask and I can usually see a flare at fifty paces and each time I've asked for bloodwork it has always proven to be an exacerbation. He never has symptoms for strep, never has a fever but always has positive ASO and Anti Dnase B and occasionally MycoP.

Now his 8yr old brother has had ups and downs all year. His teacher loves him so it isn't a personality issue but he will go from working very hard and giving his best to barely working, tons of referrals to the principal for effort and homework issues. He has always been a quirky kid, my sick one until things changed for my oldest a year ago. He used to have sensory issues about touching certain things, would only wear pants with elastic waists but this has not been a issue of late. He shows no evidence of tics or OCD like behavior that I've noted. This is what has caused me to hesitate to look into PANDAS. I didn't want to be the mom that sees PANDAS everywhere. But the increased issues in class, many behavior consequences that seem to bother him but don't stop him from getting into the same trouble, issues with sleep, frequent crying jags over nothing and irritability in an otherwise kind kid forced me to ask dr. to do titers on him. I took him to therapy for dealing with crying earlier in the school year but saw no improvement.

So I didn't sleep last night so on my break today I ran to the hospital to get preliminary test result. (I'm a fanatic about getting my own copies and checking results often before I hear them from the dr.) The only thing back is the ASO screen. It was positive so then it was sent out for the titer. So with screen being positive would you say he has it? Positive ASO for my other son means treatment but he has tics and maybe more classic PANDAS symptoms. I'm still on the fence about my youngest. Would you consider him as a PANDAS kid?

Maybe prePANDAS, where you're seeing the little "quirks" but haven't had the giant OMG!! yet.

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yes..that or just a different flavor of pandas...would love to hear how he does on abx...especially if no results at first..3 months later...i thnk i noted something similar in my ds 3 ...weird clingy crying...had myco p i guess...treated him with differenct abx...and the 3 months later just kinda snapped out of it...

i think that is how long it takes the b cells to rejuvinate...if i got that right?

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I understand not wanting to be the mom that sees PANDAS/PITAND everywhere - I think we feel that way largely because outside of our "PANDAS/PITAND community" we continually face doubters so we doubt ourselves.

 

From what I have read on this forum and experienced in our own family, if you have one PANDAS/PITAND child your are more likely to have PANDAS/PITAND with your other kids.

 

Our oldest showed the crying, irritability and sleep issues before any signs of tics. He also had sensory issues (I think he would try on every pair of socks in his drawer every morning before he could find a pair that would work on his fee that particular day). Then the classic PANDAS/PITAND symptoms followed.

 

It was 6 years later when our other son showed PANDAS/PITAND symptoms that were caused by mono. We got him on abx within days and symptoms were gone in 3 days. We still struggle with our oldest - wish we knew of PANDAS/PITAND 8 years ago. In my opinion, I would start your child on abx right away and see if there is improvement. Better to be safe ... I bet your gut feelings are sending you the right message ... Good luck!

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