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has anyone had success lessening the frequent urination with something other than antibiotics? hes going every 2-5 min. the stress is brutal. he reaaly feels the sensation to pee and pees everytime he goes . im having trouble getting his doctors to call back and the ones that have r no help. my son is miserable:-( hes 7 by the way with pdd ocd and pans.

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has anyone had success lessening the frequent urination with something other than antibiotics? hes going every 2-5 min. the stress is brutal. he reaaly feels the sensation to pee and pees everytime he goes . im having trouble getting his doctors to call back and the ones that have r no help. my son is miserable:-( hes 7 by the way with pdd ocd and pans.

First...make sure he does not have a UTI. Urine should be tested. My son has been through this several times over the last 5 years. The only thing that I have found effective is limit setting. Like CBT techniques...I tell him he is only allowed to go to the bathroom every hour. Then stretch it out to every 2 hours etc. We have done this at home and school. It is effective...the repression and stress actually diminishes for my son with the limit setting since he is in control (not the OCD behavior). OCD behavior is irrational and it puts some normality into his behavior when he is forced to act rationally. After limit setting it is like he is able to 'get over' that particular OCD behavior and just stops doing it...fades away. Goes back to normal bathroom practices of just going with full bladder sensation. My son would squeeze out a teaspoon of urine every time going every 5 min like you said. I have had to use tough love but it has always been effective.

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D-mannose, a supplement at vitamin store works amazingly well for my Ds. Has stopped quickly on this but will still continue supplement until seeing Dr. next week. Last time this happened did a urine test and found a bacteria so did abx and D-mannose.

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I have this problem really badly but it's interstitial cystitis. Phantom nerve pain in the bladder. For me, I can't stop or hold the urgency, I feel sorry for son, it's horrible.

 

For IC they use overactive bladder meds, but elmiron and aloe vera capsules are the most helpful. Also there are certain things that can irritate the bladder so you could check out the IC food list (b/c the lining of the bladder is being destroyed). I personally have to avoid acidic and carbonated foods/drinks - cause me a lot of pain. Caffeine is also very bad for the bladder.

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This came up on some other thread recently, I think, and I was trying to find the paper that links urinary frequency to glutamate (NMDA) receptors. Here it is:

 

http://www.molecularpain.com/content/8/1/20

 

I do think one of the leading docs (either Dr. M. or Dr. L. come to mind, for some reason) has noted this issue, as well. So, perhaps some glutamate modulating agents (melatonin, NAC) might be helpful?

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My son was put on desmopressin (prescription) for this today along with the D-Mannose. He had been on this earlier in his treatment so interesting. Is testing very good on everything else.

I would like to try desmopressin. It's originally to fluid retention for diabetes but heard it can help people like us with these problems. I don't retain fluid myself so.

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After reading the book "could it be B12" and discovering the connection of B12 deficiency with urinary frequency we tried Methyl B12 injections. My sons urinary leaking stopped within 36 hours (after suffering for 2 years with no solution). I believe the MB12 restarts the detox cycle for some. There is also a post out there on ammonia levels being off balance and I believe this is true.

I suggest reading the book mentioned above if you ever have time.

 

Editing to add that we also added folate with the B12 as there is typically a deficiency of folate present when there is a B12 deficiency. B12 works best in the presence of folate. So the B12 & folate are what cured this for us.

 

Here is a link previously posted by lfran explaining it (I wish I searched this post a lot sooner!)

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302062/

Edited by Pandasphilly
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I read that book a few months ago and learned a lot

I learned so much also. I was especially surprised to learn of urinary & neurological issues, ocd, anxiety etc that certainly qualified as symptoms of pandas. Also that Bloodwork may hide the B vitamin deficiency if you have a methylation trapping issue which we do. Our doctor knew how to test properly but the book helped me understand that as well. That's why i figured perhaps the mb12 injections would relieve some of our symptoms and now I can see what's left that still needs treatment. Thankfully my son was an MB12 responder and its helped a lot.

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