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Vickie

Frequent Urination

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Okay, some PANDAS kids have frequent urination/bed wetting during an exacerbation. I know that, but I cannot remember why. I know I've heard the reason before, but my memory escapes me this time. Can someone give me an explanation?

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Was it Dr. Swedo who said that she believes their are receptors in the autonomic nervous system that anti-neuronals are plugging into- just like they plug into the basal ganglia?

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from my memory from the OCD conferenece in July -- so 6 months ago -- i probably have it in notes if something is off.

 

Dr. L discussed that people have an internal and an external sphincter in their bladder. the internal just works to keep the bladder closed and it fills all day whenever urine flows into it. you don't feel it, it just works. when the bladder si full, you feel pressure on the external sphincter and therefore, have to go. i don't recall that she gave the exact reason -- perhaps not known, perhaps controlled by the basal ganglia -- for these kids, they lose function of their internal sphincter -- therefore, whenever urine flows into the bladder -- which is conceivably all day long -- they feel as if they have to go b/c they don't have the internal working and just feel pressure on the external, just like when things are normal and you have the urge to go. so even if it's a small amount, it's not working properly to allow the bladder to fill up.

 

i guess it would also stand to reason that if you only had one working flow regulator instead of two, you'd have less control as well and wouldn't be able to hold it.

Edited by smartyjones

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Okay, some PANDAS kids have frequent urination/bed wetting during an exacerbation. I know that, but I cannot remember why. I know I've heard the reason before, but my memory escapes me this time. Can someone give me an explanation?

 

Vickie, Did your son have frequent urination with all 3 of his exacerbations? The reason that I am asking, my daughter had obsessive urination when she was 3. She was found to have strep and was treated and recovered without exacerbation of Pandas. It wasn't until she was almost 6 that she began the obsessive urination again. I took her to ped for a strep test which came back negative, so this continued for a month and then BAM, she has her first Pandas exacerbation. Thanks to this site, within a couple of weeks, was able to get her diagnosed and treated for strep. Exacerbation was stopped within a week or two of antibiotics. She has had booster shots, stomach virus, sinus infection and lost two bottom teeth since and is doing well. I am HOPING that the obsessive urination will always be her warning sign that strep is involved. I had read on Dr. K's website that frequent urination is a Pre-cusor for Pandas, so does that mean that it's not actually part of an exacerbation, but more of a warning for Pandas?

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I have one Pandas daughter who urinated 20 times per day. She is 10, and was able to verbalize that she has the constant feeling of needing to go, or maybe more accurately urinating doesn't alleviate that feeling.

 

For my younger one- this is THE worst symptom. She avoids going to the bathroom-when she does go she gets EXTREMELY angry prior (stress), wipes excessively, and sometimes cries for a half hour after. On her worst day, she will hold herself like a kid that has to urinate (even after she goes) for almost the whole day. For her, I think this is a definate physical symptom (like the sister) but it is aggravated by her sensory issues, and then triggers OCD around it. It makes her EXTREMELY miserable.

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What I find odd with my son is, he did this WAY before he ever had an exacerbation. When he was 3,4, 5... at times he would go through periods of having to go constantly. Now, he didn't toilet train until he was well over 4 so I'm sure the ages 3-4 had partly to do with the "exploring public bathrooms" but after that - there were tiimes I took him to the doctor insisting he must have a bladder infection. That was part of what jumped out at me when a coworker suggested PANDAS and I looked at the list of symptoms.

 

So I don't understand why he would exibit that ONE symptom (and it was very significant, not just a fluke) for years prior to actually having PANDAS.

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The normal process of bladder filling proceeds in silence as the bladder's walls become distended. The individual has no conscious perception of the process until the contents reach around 1,000 cc (one liter). At this point, the bladder starts signaling to the brain that the time for emptying has arrived. The brain - consciously now - keeps the bladder from emptying until the person has found the appropriate location to void. Once all is ready, the brain gives the go-ahead. The bladder contracts while at the same instant, a system of sphincters that have kept the bladder closed relaxes. A network of nerve centers including the basal ganglia insures this perfect timing, this synchrony. And it is in these basal ganglia - located deep in the brain substance - that the central malfunction of PD is located.

 

Specifically, the basal ganglia are part of the connections that allow the brain to keep the bladder quiet while filling. In PD the malfunction in this part of the circuit results in a bladder that contracts prematurely at low amounts of urine, much lower than 1,000 cc. This condition of unstable or irritable bladder is known as detrusor hyperreflexia, named for the muscle that contracts the bladder wall. Such premature contractions are not strong enough to directly cause the bladder to empty but create enough signaling to the brain to create a sense of a strong urge to void. Enter the symptom of urinary urgency, a sensation that a normal person may only feel if she or he had not emptied the bladder after many hours. The patient rushes to the bathroom only to empty a very small amount of urine. Since the process repeats itself over and over the visits to the bathroom become numerous both during the daytime - urinary frequency - and at night - nocturia. Urinary urgency can become so strong that if the PD patient - already burdened by slowness of movement - fails to reach a bathroom on time, she or he suffers an 'accident', something we call urge incontinence. All of these symptoms represent a abnormality in bladder filling and urologists also know them as irritative symptoms.

 

 

 

http://www.pspinformation.com/disease/parkinsons/bladderproblems.shtml

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I hit reply button too soon! I meant to add that this info about basal ganglia and the internal bladder schincter is in reference to Parkinson's Disease (PD), but I think this is what is happening with PANDAS kids when they have the urgency/frequency.

Colleen

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My daughter still tells us that even though she is done, she doesn't feel like she is. As soon as she gets up again, she needs to go.

 

This comes and goes.

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I had always thought that this was a definite Pandas symptom. Even when DS 8 was diagnosed with what I'll call co-morbid? lyme, I figured the urinary urgency and enuresis was one of those that was only in the Pandas column. But as Colleen points out (and I didn't know) is that it's shared by Parkinson's. And Wendy lists why it might be in the lyme column too.

 

When my DD 6 started having to run to the bathroom every 2 minutes last weekend, on top of escalating OCD, I started thinking Pandas - but she has no strep. Just an unexplained 5 day fever two two weeks ago (exactly what happened to DS when he was 6, also over the New Year's holiday - way too much deja vu for a PTSD mom). Thankfully, this time around, we have a team of sympathetic doctors and a bunch of lab work that supports a trial of abx to see if that calms things down. She's not out-of-the-ballpark positive for lyme (indetermines and a few positives on both IgG and IgM). But thankfully, the treatment for both lyme and Pandas is abx and even some of the same abx. So I'm less concerned right this minute with what we call it and just hoping the abx help. Labels can come after the #$&*@! OCD fairies are out of my house!

 

Colleen - thanks for the medical explanation on the bladder - that one's a keeper - maybe you could talk to Shelia or Chemar about making your post a pinned thread? Wendy - maybe the same for yours on the lyme board?

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My 5 yo (until recently non pandas/pitands) son started with urinary frequency a couple of months ago. We tested the urine many times and even had an ultrasound. Our doctor gave him 2 weeks of zithromax because his sister was positive for myco p and the urinary frequency was no better and no worse. She then gave him 2 weeks of augmentin to cover for strep just in case, and his uf got much worse while on the augmentin. We did stick the 2 weeks out though.

 

We then went to a pediatric urologist, conventional, only one at our hospital, and she said that when all tests are negative you have to look at what the patient is reacting to in the bladder. She said that some of her pediatric patients are sensitive to drinks with high vitamin and mineral content and some are sensitive to dyes and artificial flavorings. She said that her cases of urinary frequency always increase after halloween and Christmas. She said you have to look at what is being dumped into the bladder. These things are not natural food and the bladder gets irritated. She suggested going dye free for 2 months to see if it helped. I think his urinary frequency increased with the augmentin because of one of the dyes/fillers in that liquid antibiotic.

 

I did some research and also found that people sensitive to dyes (which have phenols) are also sensitive to salicylates. My son stopped with the urinary frequency after we eliminated dyes/artificial everything and eliminated salicylates like blueberries, pineapples, apples etc. We did forget about the pineapples one day and he had a pineapple drink and had urinary frequency all that evening.

 

Now, with that all said, I do believe in the brain organ connection that Colleen described. I think that somehow things with the brain are triggered. I think that the connection of the brain to all of our organs is delicate and important and when disturbed things go awry. The DAN! doctor protocol for autism certainly recognizes the connection between the intestine and the brain as they describe and treat the "leaky gut".

 

My son did have alot of dyes around the time of his onset of urinary frequency and salicylates. Those were also in his intestine obviously. Although his urinary frequency improved, he now has started with a complex facial/leg tic. He could have a sinus infection as he had some stuffiness/cold symptoms and pain around his eyes. Our doctor is treating him with 10 days of zithromax and we are already seeing an improvement.

 

So, in my opinion, the wheels were put in motion with these sensitivities and we had a breech in the blood brain barrier at some point (he has had strep in the past, with symptoms and treated) and now we have PITANDS. And I continue to have PTSD. Except there is no post scenario yet.

Edited by mom love

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I had to resurrect this older thread because it really saved us recently! Thanks, especially to Mom Love for the info below. I'm thinking it might be of some help to some others at this point in time.

 

Our PANDAS DS14 has been in a significant exacerbation lately, and we've been trying everything to "calm the waters" and get him back to his "happy place." Commencing about 5 days ago, though, a really problematic behavior (mostly to DS and his sense of self) began: urinary urgency/frequency and volume. He hasn't had this problem, even in the depth of a previous exacerbation, since he was a toddler. He was waking up in the middle of the night with a need to pee and, a couple of times, couldn't make it to the bathroom in time. He was really aggravated and embarrassed by the situation.

 

So, I searched here, as I often do, for some sage advice. And I came across this post, in particular, and the light bulb went on in a big way!

 

As DS has struggled and returning to school after Spring Break was a big deal for him, I made a special dinner for him (all his favorite things) this past weekend. And for dessert, for the first time in literally years, I made some red velvet cupcakes with cream cheese frosting. It was a "Barefoot Contessa" recipe and called for lots of . . . drumroll please . . . red food coloring!

 

I've never known DS to be especially sensitive to any food dyes or additives, but then again, we typically eat organically and as naturally as possible with two working parents and limited time, so he doesn't get a lot of dyes on an every day basis. These cupcakes were an exception, and after having one for dessert Saturday night, he's had another one for dessert almost every night this week . . . until last night, after I came across this post. And every night this week, he's experienced this bed-wetting and or wetting-wakefulness issue . . . until last night!

 

So, I think we found our culprit! Or at least the straw that was breaking the camel's back! If inflammation via PANDAS can mess up signaling in the basal ganglia as Colleen has indicated, perhaps all it takes is something like a food sensitivity to send it over the edge. We're happy to have had a dry, restful night last night! Thanks Colleen and Mom Love!

 

My 5 yo (until recently non pandas/pitands) son started with urinary frequency a couple of months ago. We tested the urine many times and even had an ultrasound. Our doctor gave him 2 weeks of zithromax because his sister was positive for myco p and the urinary frequency was no better and no worse. She then gave him 2 weeks of augmentin to cover for strep just in case, and his uf got much worse while on the augmentin. We did stick the 2 weeks out though.

 

We then went to a pediatric urologist, conventional, only one at our hospital, and she said that when all tests are negative you have to look at what the patient is reacting to in the bladder. She said that some of her pediatric patients are sensitive to drinks with high vitamin and mineral content and some are sensitive to dyes and artificial flavorings. She said that her cases of urinary frequency always increase after halloween and Christmas. She said you have to look at what is being dumped into the bladder. These things are not natural food and the bladder gets irritated. She suggested going dye free for 2 months to see if it helped. I think his urinary frequency increased with the augmentin because of one of the dyes/fillers in that liquid antibiotic.

 

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