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scossio

urination frequency

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My son has been sick for over 3 1/2 years. We have just received a pandas dx from Dr. B recently. One of my son's most difficult symptoms is urination frequency/urgency. Can anyone tell me why they think this is related to pandas? I know that it is b/c Dr. B agreed and I have read about it in several articles, but I just don't understand the reason for it. Even when he seems to be doing well, no flare ups, stable mood, the urination issues never show improvement. Sometimes I worry that there could be something else going on because it is such a problem for him and it just does not seem to be connected to the other symptoms. Any thoughts would be appreciated.

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Hi Scossio,

 

Both of my PANS kids have urinary urgency/frequency and they have enuresis/urge incontinence when in a flare. However, these go away with the rest of their symptoms when they are not in exacerbation. The fact that your ds's are sticking around when other symptoms abate might warrant some further investigation. Some things you might consider:

 

-ask your ped to do a simple urine test for a UTI. Getting accurate results for boys is apparently a challenge. I've been told that if it's not clean catch you can't trust the results at all. If it is a clean catch sample (meaning the area is cleansed with those little wipes right before collection) and it is positive then I think I was told they'd want to run a second clean catch. From there they'd have to decide how to proceed with either treating for UTI despite some uncertainty or further testing-- apparently the only way to get a really good sample from boys is catheterization. I gather UTIs in boys are relatively rare and may be dx'd and treated more than they actually occur because of the difficulty in testing. But, if your ds is on abx, maybe it's not an issue.

 

-definitely, if you see a PANDAS doc (sorry I can't remember), ask the doc about this.

 

-Is your child on any medications? Before we knew our dd had PANDAS she was being treated for a bunch of conditions based on her symptoms. She was put on SSRIs for her OCD. She also took Zyrtec for allergies. When the urinary issues came up we learned through our then-doc that both SSRIs and Zyrtec can have these issues as a side effect (and so it was attributed to that and they switched meds to no avail). This being a side effect of some allergy medications was also confirmed by a different allergist we saw for ds-- who said yes it can be a side effect and that Zyrtec effects the CNS and he recommended Claritin (which apparently is better CNS-wise), but only if really needed, b/c of that. So, if your child does take medications or supplements it may be worth some google searching of the drug name +enuresis or +urinary

 

 

HTH

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My son has frequest urination only just before, during and after a flare. This is one of the ways I can tell a bug is on its way, even before any other PANDAS or illness symptoms arrive. I can tell when things are truly winding down because this symptom subsides. The constancy that yours experiences make me wonder - have you had your kiddo checked out for UTI or any other causes of the concern?

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My two girls have had this with flare ups.

 

Our neuro had said she spoke to a urologist who mentioned that the inner control for the bladder (I think) is controlled in the basal ganglia. This is their theory on why the urinary frequency. I think this happens with some other illnesses that affect this part of the brain- I had done a little looking into it a year ago, and I thought this looked pretty reasonable.

 

I would think over time, maybe quite some time, without an exacerbation, that this will get better.

 

I would also consult a doc if everything else seems to be good, minus this one issue. PANDAS has LOTS of symptoms, I usually blame everything on it- but it is important to get stuff checked out if it persists alone (I think).

 

Ay- more doctor's appts :(

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My son has been sick for over 3 1/2 years. We have just received a pandas dx from Dr. B recently. One of my son's most difficult symptoms is urination frequency/urgency. Can anyone tell me why they think this is related to pandas? I know that it is b/c Dr. B agreed and I have read about it in several articles, but I just don't understand the reason for it. Even when he seems to be doing well, no flare ups, stable mood, the urination issues never show improvement. Sometimes I worry that there could be something else going on because it is such a problem for him and it just does not seem to be connected to the other symptoms. Any thoughts would be appreciated.

 

this was an early symptom for us at age 4.5 years, before we knew about PANDAS. Dd suddenly started acting like she had a UTI, and so I brought her into the ped. They checkded her urine and it was okay (no infection). 2-3 days later I brought her in with a high fever (and she still had the frequent urination). They didn't do a throat culture, but they did recheck her urine. In hindsight, years later, I realise that she had strep at that time. A week later, her younger sister had vomiting and fever (so now younger sister had strep, also undiagnosed). She might have gotten abs (I'd have to check records, it was 8 years ago), as younger sister tended to get ear infections and abs for that.

 

Dd's frequent urination subsided, but she still had mild issues (would pee at night, then brush her teeth, then get into bed, then have to get out of bed to pee again) until she was diagnosed with PANDAS at age 7. When she got put on abs, that urinary symptom went away.

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I'm limited time-wise right now, but we have discussed this on this forum previously, so a search with the term "urinary frequency" should turn up at least a handful of threads.

 

As I recall on a recent thread, one of the well-known PANDAS docs (can't remember if it was Dr. L. or Dr. M.) had a scientific explanation for urinary frequency in PANDAS kids. I THINK (but don't hold me to it because sometimes I admittedly have "glutamate on the brain") that it has something to do with excess glutamate and its impact on a particular receptor in the brain. Successful PANDAS treatment usually alleviates this symptom fairly readily.

 

I'll also note, though, that, from personal experience and yet another thread on this forum (maybe 6 to 9 months ago now), however, that other things can cause urinary frequency. We had an experience with red food dye (in a packaged red velvet cake mix), but it took us a while to identify the culprit. Still, seems as though that's a common one for many kids.

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There are really two different items raised by Dr Swedo. Daytime urinary frequency and then nightime enurisis. In the last IOCDF conference two of the researchers commented that the dopamine D2 receptor is also on the outer sphincter -- and so if you are having something that interacts with the D2 receptor in the blood, it tends to also affect bladder control and the feeling of needing to pee.

 

Regardless, it is worth getting the urine checked to see if there is another trigger.

 

Buster

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Thank you for all of the responses. My son started with the urinary frequency as soon as the pandas symptoms began 3 1/2 years ago, and I guess if I think really hard there have been times when it has "improved" but has never been back to his normal habits before pandas symptoms. Its hard for me to say if he flares when sick b/c my son is one of those kids who we suspect reacts to others when sick but does not necessarily come down with the illness himself each time. I can't image it would be a UTI since we have been dealing with it for 3 1/2 years and he has been on 2,000 mg abx/day for 3 months now. He also says he does not feel any discomfort at all when urinating...he just always has to go...and it is a normal amount when he does. I am going to have his urine cultured just to be sure, but with the abx I'm not sure anything will show. He is on an SSRI, but again the symptom was there long before he started the meds. Interestingly...his dr tried him on clonidine for sleep recently and he began to wet himself at night, I realized it was the clonidine and took him off of it right away since he had never wet himself at night before. I am just perplexed by the amount of urine he produces, the frequency of urination, and how it connects to pandas. If there are any other thoughts please share, thanks so much!

Stephanie

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If you google "Urinary control, basal ganglia" some good websites regarding urinary urgency in Parkinson's will come up. You may find some interesting tidbits such as: the exact mechanism that is causing the problem, tips to help with management of the problem and medication suggestions.

 

I would still hope for an eventual complete resolution of this issue in time. My kids have had some issues that seem to linger long after they are mostly recovered from a pandas episode, but most have gone away in time. I don't know if your son had ocd, but I would also look to be sure there is not an ocd component that is reinforcing this issue. I only mention this because for one of my daughters, this physical issue became very intertwined with ocd, and it was the hardest issue to overcome, and does return with exacerbation. For my other daughter, it did not involve ocd, only the physical, and she was able to explain it more clearly to me.

 

Good luck.

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If you google "Urinary control, basal ganglia" some good websites regarding urinary urgency in Parkinson's will come up. You may find some interesting tidbits such as: the exact mechanism that is causing the problem, tips to help with management of the problem and medication suggestions.

 

I would still hope for an eventual complete resolution of this issue in time. My kids have had some issues that seem to linger long after they are mostly recovered from a pandas episode, but most have gone away in time. I don't know if your son had ocd, but I would also look to be sure there is not an ocd component that is reinforcing this issue. I only mention this because for one of my daughters, this physical issue became very intertwined with ocd, and it was the hardest issue to overcome, and does return with exacerbation. For my other daughter, it did not involve ocd, only the physical, and she was able to explain it more clearly to me.

 

Good luck.

Hi, still brand new here....I'm the one with the 21 yo ds just being diagnosed (me - 100% sure). This has always been a part of my ds life, as well as intermittent NE. It is probably the most bothersome symptom for him. Been to many urologists over the years - no diagnoses ever - just said he'll probably grow out of it (ha!) Anyway, I read somewhere in the last couple of days that there is a connection between the basal ganglia and the first internal bladder sphincter. With this type of disorder the first sphincter is supposed to remain closed until the bladder fills to a "normal" full capacity, opens early, causing pressure on the second sphincter that tells the body its time to go NOW. Hence, lots of visits to the bathroom with little production and the feeling of never being quite fully empty. Hope I did this justice!

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