Are the Kidneys damaged?

[hugs2day]

Since PANDAS started my son can't travel far for many reasons but one of the worst physical symptoms is his frequent urination. Its very frequent and sometimes he has to actually urinate other times nothing comes out. That worries me that his kidneys could be damaged over time. Is there any information on this symptom? Research/treatment??? This symptom never remits even when the psych symptoms tame down into remission.

He has been suffering since age 5 is now almost 7 years, worried this symptom is permanent...

[AmySLP]

Have you had him evaluated by a urologist? My youngest (4 1/2) is a child we are on the fence about PANDAS-wise. SHe has night time incontinence that seems to improve on antibiotics, yet negative for UTI. In the past she has had daytime frequency (12+ times /day) & we decided to rule out problems with a urologist. In our local area the interpretation of the test was that she had residual after urinating & a small capacity bladder. Took her to Childrens in Philly & the uruologist said it was shadowing they saw on the ultrasound, not residual and that it's a common mistake. HE did urge us if the symptoms continue to age 6-7, then she needs to come back. I still do take her urine in frequently for dipping because I don;t want to miss a UTI. I know Dr. B feels her urinary issues are from PANDAS, which again, we are still on the fence about with her.

[911RN]

Since PANDAS started my son can't travel far for many reasons but one of the worst physical symptoms is his frequent urination. Its very frequent and sometimes he has to actually urinate other times nothing comes out. That worries me that his kidneys could be damaged over time. Is there any information on this symptom? Research/treatment??? This symptom never remits even when the psych symptoms tame down into remission.

He has been suffering since age 5 is now almost 7 years, worried this symptom is permanent...

 

My son has had this intermittently over the years. It is doubtful this is medical/biological....our experience has been the urinary frequency is part of the OCD behavior. Obsessive, compulsive with need to urinate. Not relly responding to body sensation that they need "to go" rather being driven from the mind, so to speak,to urinate. Just like someone with a handwashing OCD washing their hands all the time...only this behavior is constant need to relieve oneself. That's why sometimes they go- something may actually be there to eliminate (caught at the right time)...other times there is nothing to relieve.

 

I have carried a urinal in the car, in the past, when my son was like this- when he kept wanting to stop to urinate. Told him we were not stopping and he could use urinal in the car....he would try and nothing would come out. Told me he had to be in a bathroom to go...think that may have been an important part of the "ritual." Said no, if you have to go- it will come out. This tactic stopped the urine frequency OCD behavior while driving. I believe it started as an avoidance behavior, in school, where they were allowed to get up and use the bathroom...so, he started getting up numerous times thus, "avoiding" when he did not like that they were doing in class. One teacher developed a chart for him that he could only go x amount of times while in her class. This was helpful in stopping behavior also.

 

I, too, was concerned about UTI's but after normal u/a's and cultures...I realized this was not a urine problem for my son. It was an OCD problem. He would go into cycles of it- be a big issue then not see it for awhile. Luckily, have not seen it for a long while. He is on SSRI now so OCD behavior has lessesed. Hope this behavior stays gone, as well.

[thenmama]

xx

Edited March 27, 2013 by thenmama

[LNN]

My DS also has the urination issues you describe. Some may be OCD/habit, but often there is a physical need. It seems to come with other medical symptoms but not necessarily with the neuropsych symptoms. So for us, it is health related but I don't know exactly how. My DS has somewhat elevated mercury levels and mercury can cause frequent urination (not just an urge - with actual output).

 

My advice would be to track it and keep an eye on it. I don't know that it's a kidney problem per se - sounds like the experience of others is that you may not detect anything with traditional testing. But IMO, if there's abnormally high volume, then it's a sign of some sort of medical issue. Maybe don't freak over it, but if you feel it's beyond an OCD thing, then don't dismiss it entirely.

[dut]

Hello

 

One parent reported on here that their Dr, Dr Latimer, I believe, says that she felt it was due to the sphincter in the urethra responding to the excess dopamine during an exacerbation. So if that is true it could have a physical but reversible cause....

[colleenrn]

I had posted this back in January when we were talking about why our kids have frequent urination/urgency with PANDAS symptoms. I found this talked about a lot on sites dealing with Parkinsons disease. The basal ganglia is damaged in parkinson's also. The basal ganglia controls the bladder's internal schincter. I think this may be what is happening in children with PANDAS. Here one website that talks about it. I posted a part of the article and the link.

 

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

 

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.

 

Colleen

[dcmom]

colleen-

 

how are things? It's been a while- hoping that means things are going well....

[colleenrn]

DCmom-

Hi to you too! Things are going relatively well I think. All 4 kids are still on antibiotics (3 oldest on zithromax and 5 yo on augmentin). My youngest will most likely have a T&A early next year(other 3 have had T&A already). March was the last time they cultured positive for strep. Two of my kids had positive rapids in March. One kid was on zithromax 250mg/day and had recewntly finished a 10 day course of Augmentin XR 1,000 mg/twice per day- STILL tested positive. My 5 yo tested positive on a rapid strep test at the same time. He had been on Augmentin 250mg/twice per day.

 

However, there have been other times since March that I knew they had strep D/T rapid onset of PANDAS symptoms. My dr treated them despite a negative 72 culture and they improved. I am suspicious right now they may have strep or being exposed everyday at school b/c three of them have had a ramp up of symptoms.

 

It is a constant battle to figure out if I should have them tested or wait a few days.

 

Colleen