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changes in urination

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Hello amazing Forum, 

On here daily learning from you and feeling less alone. We are making our way through our first winter with PANS. my 6 year old has been doing well on Keflex prophylactically.

In December, we noticed that our daughter started peeing slightly more. So instead of 4-6 times a day, more like 7-8 times.

On several occasions, she would pee back-to-back....like 3 times in in an hour and a half. She would hold her crotch and occasionally say "I have to pee so badly". A few times she'd sit on the toilet and nothing would come out. All of this is a deviation for her.

We put her on alleve for a month. The overall number of times per day she went stayed the same, but we saw a decrease in going multiple times in 90 minutes and she didn't mention the feeling of having to "pee so badly".

We just took her off the alleve to see where things were. On day 6, she is again saying "I feel like I have to pee", but now she's getting distracted and then can usually hold it for a while longer.

I am wondering whether any other parents out there have had this milder version of urinary frequency present? My gut tells me it's a symptom. And if so, did you use alleve, do a 3-day course of steroid, or just wait and watch?

I would so appreciate anybody weighing in with their experiences or any wise thoughts.


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We have had a bit of urination frequency symptom, but not as severe as 3 times in an hour and a half.  Our clearest symptom in this area was wetting the bed overnight, at the worst, about every 3rd night or so.  This might not be exactly the same thing you are talking about, but we always interpreted it (right or wrongly) as indicating that there was a flare, and some trigger around that we tried to figure out.  We took that interpretation because it was what we read as going with flares, and indeed, we did experience other (mainly OCD) symptoms worse when his urinary trouble was worse.

In our case, the last time we dealt with the problem, we eventually found out that he had some gum disease (a teeth cleaning set off the flare), and whatever was getting into his bloodstream through the diseased gum was setting him off.  Better brushing and regular mouthwash (which he still does now, over a year later) seemed to solve the problem for us.  Sometimes, you don't have good evidence for a trigger, and you can only guess and try to take steps on the best guesses.

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