Can Children with SB be Potty Trained?

The short answer is , "Yes. Some can be potty trained in a typical fashion, many will have to be potty trained with some adaptations."

At its core, the definition of "potty trained" is not going when you shouldn't and going when you should. When a child has diminished sensation and/or control over their bladder and bowels this requires some unique approaches that can result in some unique advantages.

BLADDER:

Not Going When You Shouldn't:

Many children with SB do not have the ability to "hold it" and so medication such as Oxybutynin (ex; Ditropan) is prescribed. Essentially what Oxybutynin does is relax the bladder and allow it to fill without emptying.

Going When You Should:

Since a bladder on Oxybutynin is not emptying on its own, a regular habit of intermittent catheterization is prescribed to empty the bladder at regular intervals (3-4 hours).

This combination of medication and catheterization allows the child to remain dry. Potty training essentially comes down to teaching a child how to catheterize themselves. This usually occurs sometime between age four and early grade school years.

BOWEL:

Not Going When You Shouldn't:

Because most children with SB have slow bowels, they usually struggle with constipation. This is often managed through a combination of diet and the use of Polyethlene Glycol (such as Miralax) as a supplement.

Going When You Should:

The bowels can be emptied in a number of ways including various enemas, digital stimulation (in the case of infants and toddlers) or high doses of Polyethlene Glycol which takes effect over a period hours or days.

One of the most popular ways to manage bowels is through a Malone Antegrade Continence Enema or "MACE" procedure. The MACE procedure creates a hole through the abdominal wall which connects to the appendix. A hole is left in the abdominal skin which can be covered up by a small band aid. When it is time to flush the bowels, a small tube is inserted through the hole and saline solution is administered. This works exactly like an enema except that the fluid is coming from the top-down and flushing the bowels instead of from the bottom-up which is less effective.