Severe, lifelong enuresis in a 19 year old male

[RR's mom]

We are seeking advice on treatment for our son who has consistently wet the bed and had daytime urgency issues all his life.  Exams by pediatric urologists and medications offered no help at all.  We know he has a sleep disorder and sleeps with only about 65% efficiency. He is difficult to awaken and always tired.  But the sleep doctor offered no real help--the medicine he gave our son did not change his sleep, but did cause our son to have more behavioral issues, as  did imipramine and its related drugs.  Our son has a mild seizure disorder and the genetic anomaly 47,XYY which produces poor muscle tone, poor coordination and a low frustration tolerance and propensity to lose his temper in the boys it affects.  Our son has done well in most areas, despite the XYY, but has had no help with the enuresis.  Given his genetic propensity for poor muscle tone, I have long suspected that might be part of the problem, but no doctor has ever shared any ways to increase muscle control in a young male, or  even given credence to my theory.  Our son is close to the time of being out on his own and we desperately need a way to help him.  His dad has always felt it was either our son's own fault("too lazy to get out of bed"), or that I did not train him correctly (despite the fact that I used the same toilet-training methods on our other two children with positive results).  I have been more convinced that it was out of his control, but as he has grown up and no progress has been made, it gets more frustrating as well as less easy to hide.  His siblings resent the strong odors each morning and view him as immature for being unable to control this.
Where can we look for help?  Are any of the treatment centers advertised reputable? Where do we find a specialist who can help us deal with this?  We have tried all we know, with no positive result.  Thank you.

[who_dis]

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[Kevin Pho, MD]

You clearly have been through a comprehensive evalation with pediatric urologists - you may want to consider evaluation with more urologic opinions at a major academic medical center.  I would assume that tests like a cystoscopy have been performed to rule out anatomical causes.

Medication like desmopressin and tricyclic antidepressants have been helpful in short-term situations.  Non-medical therapy using enuresis alarms has also been shown to be helpful.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[GrandmaA]

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