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I posted a couple weeks ago about my daughter's symptoms and my suspicions of PANDAS/PANS. Most of her symptoms have resolved except for the feeling she gets when she uses the bathroom and then feels like she still needs to go. She's up, down, up, down on the toilet. She's been wearing either a pull-up or a mini-pad for the last month because she's afraid she's going to wet her pants or leak a little urine. She's so afraid she's going to have bathroom problems at school that she cries every morning and begs me to keep her home until she gets on the bus. (She's in first grade.) What I thought before was general anxiety I think now is specifically related to her bladder issues. We were at the pediatrician a week ago and she tested negative for strep and UTI. The ped is receptive to the idea of PANDAS/PANS, but doesn't know how to proceed. We tried a week on oxybutynin (a bladder relaxer) which didn't help at all.

 

What additional testing does my daughter need? Are there meds we should be trying (she's not on anything right now)? Would it help to see a urologist?

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Frequent urination is a big tell for PANDAS/PANS, and as I recall, it has something to do with the nerve receptors for the urge. If you search the forum, you'll find a number of threads on the issue, one of which is linked below:

 

http://latitudes.org/forums/index.php?showtopic=22652&hl=%2Burinary+%2Bfrequency#entry173924

 

I would proceed with PANDAS/PANS testing: bloodwork -- immune panel complete with ASO and anti dnase b titers, and the Cunningham test, if you can access and afford it (probably not covered by insurance). A negative strep swab is not, unfortunately, definitive proof of no strep; sometimes the swab isn't done properly, and the strep could be located somewhere other than the throat, too.

 

Good luck!

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Annieo-

 

What you are describing has been one of my daughter's biggest pandas issues over the years. I personally think urinary frequency comes from a physical/biological issue caused by pandas (this is discussed in the literature)- but then for some kids ocd/ sensory issues get involved with the toiling issue and it all goes overboard. I have two pandas daughters- both have had urinary frequency when in a flare up. One does not even notice. The other, it takes over her world with an ocd reaction to it. (always feeling she has to go, feeling she is always wet down there, avoiding using the bathroom, wiping excessively, and on and on.) The fact that this fear is causing her to not want to go to school would be a huge red flag for ocd in my house. In my opinion, your daughter needs treatment for pandas (antibiotics to start, maybe steroids) and she also needs CBT/ERP therapy to help her with the ocd/sensory involvement.

 

All of my daughter's urinary issues resolve when pandas episode resolves thanks to treatment.

 

Good luck- I know how frustrating/disruptive this is to all!

Edited by dcmom
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Anneio

 

My 5 year old son is having terrible problems with excessive need to wee. (It started 8 weeks ago, along with significant nightmares, and sleep disturbance and then 3 weeks later, vocal and motor tics). He has no history of any OCD type behaviour or tics, or any other developmental issues for that matter. The doctor did a blood test for strep and found elevated titres and he was treated with anti-biotics for a week. Symptoms improved (but not the excessive weeing) but two weeks later, it is worse than ever.

 

He can go to the toilet once a minute at times - very little comes out. He has started to just wee in his pants, he is so fed up of going to the loo, and I have even found he has weed on the floor near the toilet a couple of times (he said scared of centipede in toilet). sometimes we are going through 5 or 6 pairs of pants/shorts in an hour or so. I have wondered if it is Pollakiuria, or maybe it's a tic as it appears there is such as thing as a bladder tic. He had an ultrasound of his renal tract last week - no evidence of any problems. I'm going back to the doctors today. I don't have any answers - I hope your daughters clears up soon x

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FWIW, there are a couple things that seem to help in our house, that may be worth a try just for the urinary issue alone: magnesium citrate and D-mannose. However, I do not know what the mechanism would be for either one.

 

Years ago, I thought the mag citrate merely relieved constipation (our primary reason for using this), but there is something more to it than that, because it helped even when there was no constipation present.

 

I would think that the D-mannose should only help if there is some sort of e-coli in the bladder, but ds had never tested positive for a UTI. Perhaps there is either some other germ that D-mannose affects or perhaps there is e-coli present at undetectable levels. (D-mannose can be purchased as a sweet powder or in capsules.)

 

In the long run, antibiotics have helped with the urinary issue even though we have never seen a dent in the OCD. Once in a rare while, the urinary issue comes back, though I try to be disciplined with the magnesium.

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  • 3 weeks later...

Anneio, a 3-4 week trial of antibiotics would be worthwhile even in the face of negative cultures. Augmentin (East or West) or Azithromycin (if in the West Coast) are good antibiotics to try.

​LucyC, what antibiotic was he on? Most PANDAS kids need longer than the typical 1 week course of antibiotics.

​For both kids, I would also recommend swabbing family member for strep. It's possible other infections are the problem or the strep is hiding in a difficult to swab location (sinuses etc). Also, check for perianal strep.

 

I also wonder if anybody has looked into whether Azo offers any symptomatic relief to these kids. It can help people with interstitial cystitis (who also don't have bacteria in their bladder).

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