“Dysfunctional Elimination Syndrome” (By Pam)

Toby has struggled with bladder control, and potty accidents from birth. At doctor visits the answers were always the same... "give him time, kids develop and mature at different rates, he should grow out of it."

So we've just dealt with it the best we can. 

He sleeps in Pull-Ups, and we've tried various reward systems to try to help during the day. I often send extra clothes in his backpack to school. If he is in a pull-up during the day, he makes NO effort to stay dry, so that doesn't work. ARG! It's been a long and at times frustrating battle. With less then fun side effects: Laundry, self esteem, outings cut short, LAUNDRY, etc. 

Well, FINALLY now that he is 8 years old, his new pediatrician agreed to address the issue more seriously. So we scheduled a special appointment took him out of school, to be told to encourage him to push more out, and keep a chart for 2 month.! Arg!! What do you think we've have been doing for the last 8 years?!  Discouraged we followed his instruction, and no big surprise, we saw no improvements. 

Dan called and convinced the doctor we needed something more to go on. At the very least a physical exam to look for problems. So he had his office set up a referral to Primary Childrens Hospital to see a Pediatric Urologist.  

Primary Childrens:

We got a big ol' packet in the mail to fill out before the visit, with very specific questions, and urine measurements to take.  I was very encouraged that we were finally  getting somewhere. 

The Urologist was great! She addressed Toby the whole time, and made the awkward exams and questions doable. They also took an X-Ray, and ran tests on his urine. We talked about his digestive and Colic issues as a baby. 

Results: The good new is that physically his anatomy is formed correctly and his kidneys etc. are working.  

The problem is what she called a "Dysfunctional Elimination Syndrome". I'll do my best to explain, without her cool little white board drawings, and technical terms. 

The bladder muscle itself is like a balloon, that we have no control over, it involuntarily begins  to contract when it needs to be emptied, sending a signal to the brain that we need to pee. Then a smaller muscle down further around the urethra (that we DO control) has to be relaxed to allow urine to exit. In Toby this smaller muscle is the problem. It doesn't receive and send the signals that it's time to pee, it just stays tight. 

What this does... his bladder stays mostly full at all times, then when it's too full it starts to contract sending SOME pee out before Toby knows it's coming, resulting in small, very frequent accidents, and never emptying the bladder.  

The Fix: This smaller muscle needs to be retrained, and it will take some time. There are some drugs to help, but he can't use them yet because there is a secondary problem, and most likely the primary cause of the situation. On x-Ray his bowels are completely backed up with hardened waste, leaving additional pressure on his bladder muscles, and making it so he doesn't get signals that his bowels are full either.  

So FIRST: We have to clean out and retrain his bowels. Emptying them is the first step, but they won't retrain and learn to send signals until they have been emptying for (average) of 6 weeks. The doctor strongly recommended starting the two days of initial emptying  when we can be home and focused without distractions. So we decided that conference weekend is ideal.

He will be on a few types of laxatives for two days, then will remain on a powder laxative for the next 6 weeks at least. 

While we are doing this,  (without the help of the bladder drugs, because they cause constipation) we will begin retraining his bladder. To start... we are supposed to clock/time train his bladder. We need to find a watch with a soft alarm that we can set to go off at about 1 1/2 hour intervals signaling Toby to pee, with the eventually goal of adjusting the time increments until we can get him to every two hours for a period of time without accidents.  The main idea being to retrain his body to eliminate waste regularly and hopefully allowing his body to start sending signals when it's time to visit the bathroom. 

I don't know if any of that made any sense (or if anyone actually read all of it) but that's my best summary. Hopeful, to have some answers, and in search of a children's size watch with adjustable alarm settings. 

Weekend agenda: Watch conference & clear the poop out.