Toilet Training and Spina Bifida

Toilet Training, Bowel Programs and UTI’s are one of the most common topics at any Spina Bifida gathering.  Sit in the back of a Spina Bifida Teen Conference, next to the wheelchairs, and one will quickly figure out why.  The nerves that control the bowel and bladder exit the spinal cord at S2-S4.  Therefore, paralysis at any level usually affects control. The nerves controlling these organs attach to the very base of the spinal cord and are therefore cut off from brain input. The signal just can not get to the appropriate receptors.  Thus, only about fifteen percent of kids with Spina Bifida will gain control without a support program. 

The child with Spina Bifida has what is called a  neurogenic bladder/bowel.  Understanding the type of bladder/bowel can help facilitate the correct management program

In a spastic bladder the bladder fills with urine, where an unpredictable reflex automatically triggers it to empty.  With a spastic bladder you do not know when, or if, the bladder will empty.  In a flaccid bladder the reflexes of the bladder muscles are sluggish or absent.  A flaccid bladder may not empty completely.  There are two main types of neurogenic bowel, depending on level of injury. An overactive bowel in which voluntary control of the external anal sphincter is disrupted.  The sphincter remains tight and thus constipation and retention of stool can be a problem.  In a flaccid bowel, one has marked decreased  stool movement and slow stool movement.  The result is again constipation and incontinence due to lack of a functional anal sphincter.

What are indicators you child may be in the fifteen percent who will achieve bladder and bowel control?   A few are – the ability to make a steam, the ability to feel the need to go or feel the sensation while going,  the child is dry for several hours, the child can walk with a low level of support.

If you feel your child has some control, the physician is asking you to give it a try or the child is indicating an interest, here are some suggestions……

First – Read all you can about toilet training. You know your child.  You will need to make a plan and stick with it 3-7 days.  Switching plans and approaches will only confuse a child who may or may not have the sensation and muscle control to achieve this skill.

Second – Give your child as much information as possible.  Read books, watch u-tube videos, allow the child to see others use the toilet.  Talk about wet and dry.  Teach the terminology. The more information and examples your child has the more likely they can use cognition to help this already complicated process.

Third – Teach your child the self care skills needed for total task completing.  Can they go to the from the restroom by themselves? Can they take off diaper, pull down/up pants, get on and off the toilet, wash their hands?

Forth – Realize the child may or may not have the muscle control and/or sensation to achieve dryness.  Scolding, punishing, getting angry will help no one.  Keep this positive!

Fifth – Set up specific times during the day to cue them to use the potty.   When they get up (bladder is full).  Before they eat(food is a high motivator).  Fifteen minutes after eating (a child is likely to have urine in the system 15 min after drinking).   Prior to getting in a car (motivator).  During commercials (motivator).  And realize that more urine is produces in the mornings vs in the evenings.

Sixth – Use a timer.  Start at 30 minutes.  Teach the child to use the restroom when the times goes off.  Reward for alerting and self initiation with the timer.

Seventh – Use a variety of rewards.  Keep it positive and fun.

Eighth – Set up a program and stick with it for 3-5 days. The  first 2-3 days you will need to keep your eyes on your child and your child thinking about toilet training all day long.  Do not expect to do this while working at home or while engaging in social media.  24/7 attention is needed or you are missing  training opportunities.

Ninth – Once you have tried, give yourself and your child a break.  Sit back and assess what you have learned.  Gather additional information.  In 3-5 month try again.

I hope the above information helps.  Comments and additional suggestions welcome.

I am attaching a great resource from the National Spina Bifida Association.


One thought on “Toilet Training and Spina Bifida

  1. As 65 y/0 male, myelomeningocele, a symptomatic, high level functioning, I wish the info had been around in 1950. I
    There were no shunts, either. Limping, two heart attacks, now arachnoiditis. Controlled by pharmaceuticals. I wrote an award winning book in history. I also have hydrocephalus.

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