Dysfunctional Elimination Syndrome (DES). What does it mean, and how does it affect VUR?

We had never heard the term Dysfunctional Elimination Syndrome before Lizzie had surgery in September of 2007, but they say hindsight is 20/20. I believe that if we had known about the dysfunction of Lizzie’s bladder (and possibly her bowel) we might have made different choices along the way. We believe that DES is what caused the failure of Lizzie’s reimplantation.

DES is a term used to describe bowel and/or bladder disorders, including bladder instability, constipation and infrequent voiding. DES is often overlooked in children with VUR, but can play a major role in the rate of resolution as well as the effectiveness of surgery. One study shows that DES can actually cause recurrent UTI, as well as slow down resolution rates. For this study, all of the patients with failed reimplantations were found to have DES.  This has certainly been the case with our little Lizzie.

It was not until after Lizzie’s reimplant that we discovered her grossly enlarged bladder. It is now believed that her bladder was retaining urine, which may have contributed to her constant infections. Because of the urine retention, her bladder pressures built up, actually causing her VUR. With all of that pressure, the urine needed to go somewhere, so it traveled back into the kidneys. The surgery corrected the anatomical part of the ureters, however it did not address the bladder dysfunction, so the VUR (which is now considered secondary) was still being caused, just by a different mean.

There are many types of bladder anomalies and dysfunction that can play a role in VUR.  A neurogenic bladder, or non-neurogenic neurogenic bladder (Hinman-Allen syndrome) can also play a part in VUR.  In a neurogenic bladder, the nerves are damaged, and can cause VUR (secondary).  We believe that it is possible that Lizzie has this condition.  After a urodynamics study and an MRI, we now know that it is not the nerves in her spine causing the problems (which is a wonderful blessing) but we believe there may be damage to the peripheral nerves leading to the bladder.  A non-neurogenic neurogenic bladder is exactly that.  It’s a bladder that presents as a neurogenic bladder, with no nerve damage.  This generally happens when a child holds in their urine, and refuses to release the bladder, causing built up pressures, and you guessed it, VUR.  I will write more on these two conditions later.

Constipation is another dysfunction that doesn’t get enough air time in my opinion. It’s the same general idea. Feces accumulate in the colon causing constipation. Because there is a mass in the colon, there is extra pressure put on the bladder. It is VERY important to manage constipation in children with VUR. It can actually reduce the time it takes for VUR to resolve.  Since putting Lizzie on a high fiber diet, her constipation has gotten much better.  If she goes more than 48 hours without a bowel movement we break out the miralax.

It is very important to discuss with your doctor, how your child’s bladder and bowel are functioning.  Some of the tests are non-invasive, such as an ultrasound, or in older children, an input/output journal can be very useful.  The ultrasound can show any obvious defects to the bladder, and also if there are compaction issues in the bowel.  If there are some elimination issues present, I would suggest doing a urodynamics test before having any type of surgery.  Studies have shown that if you can manage the dysfunction, it can lead to much better results.  I can also say from experience, that DES can be a contributing factor to the failed treatment of VUR.  Had we known about Lizzie’s bladder and possible bowel dysfunction, we might have opted for the vesicostomy at a much younger age, and put off the reimplantation until a later time.

For more info check out these links, and check out our VUR resources page.

Dysfunctional Elimination Syndrome

• This is a great article on how DES can slow resolution time and cause failed reimplantation http://www.medscape.com/medline/abstract/9719268?src=emed_ckb_ref_0
• Very good (very technical) article on Voiding disorders  http://www.emedicine.com/ped/topic2414.htm
• An abstract discussing VUR and elimination disorders  http://www.ncbi.nlm.nih.gov/pubmed/18491738?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
• A good article on bladder and bowel dysfunction in relation to VUR  http://bcbsma.medscape.com/viewarticle/562914_6