PANDAS

[KimDeL]

Does everyone's child who has been diagnosed with PANDAS have the urinary frequency? I have never noticed my son to have that symptom so I am curious.

[Worried_Dad]

Our son did not have this with his initial illness (when he was diagnosed with ARF and SC rather than PANDAS). Major exacerbation in summer 2008, though - with classic PANDAS symptoms - did spawn major urinary frequency. He had to pee constantly, and it drove him crazy!

[michele]

Yes we have had this off and on when symptoms are exagerated. He runs in and out of the bathroom feeling he needs to go but little comes out . I think this is a compulsion when symptoms are flaring. Right now he is having the trouble making it to the bathroom to make his bowel movements. He makes a mess in his pants. It is like he misses the urge and waits too long. Then he grabs at his bottom over and over through his pants. He has things really irritated. We are currently on Celexa and it should help with the anxiety but the bowel trouble has not improved. He has beenhaving the urge to grab his backside for four months. I have tried every treatment but seen no improvement yet.

 

Our son did not have this with his initial illness (when he was diagnosed with ARF and SC rather than PANDAS). Major exacerbation in summer 2008, though - with classic PANDAS symptoms - did spawn major urinary frequency. He had to pee constantly, and it drove him crazy!

[EAMom]

Does everyone's child who has been diagnosed with PANDAS have the urinary frequency? I have never noticed my son to have that symptom so I am curious.

 

Our dd had urinary frequency at age 4.5, but not with more recent PANDAS episodes. We think this was one of her first PANDAS episodes. She got a high fever 2 days later (no strep test done ....arghh!). Her UA and urine culture were negative (so not a urinary tract infection like we thought at the time). 6 days later her younger sister had vomiting and fever (we now realize that was likely strep as well, passing through the family). Unfortunately, my kids don't get a classic sore throat with strep, so docs never cultured them (ever! even with fevers or fever, vomiting...everything was always "viral") until last year when PANDAS dd got severe OCD/anorexia nervosa (age 7.5 years) and we learned about PANDAS. Both girls were cultured positive at that time.

 

I would say urinary frequency is a classic symptom, but not all kids get it. And some kids get it with some episodes, but not others.