Cerebral Palsy and Toileting

As with other areas of development, bring your patience before embarking on this journey. This can be a very emotional time for everyone. It may be helpful to approach toileting as a process  where you open yourself to learning more about your child in the most non-judgmental manner possible.

The shifts in muscle tone that come with cerebral palsy make it tough for these children to always know and feel what is happening with their urinary tracts and intestines. What may appear to be laziness or a lack of motivation, may just be another cerebral palsy related challenge.

Insight from a Nurse Practitioner

Nurse Practitioner Susan Demetrides works in a CP clinic offering comprehensive care the pediatric cerebral palsy population. Part of her job involves helping families to assess readiness for potty training. Below Ms. Demetrides shares some of her insight in this area.

First, I assess every child individually. Toilet training is more complex than most people think. As you probably know, the child needs to be emotionally and physically ready.

If a child is acting like a 2 year old they likely aren’t ready. Many children with physical disabilities impacting the nervous system are not ready until after 5 Years. Most children should be at a cognitive level of 3 years (with or without CP before toilet training should seriously be considered). There are some children who are ready before then, but unless it is the child really initiating, not the parent, then earlier toilet training often fails.

From a physical perspective, the child needs good trunk support and foot support to even feel comfortable sitting on a toilet. If positioning is not adequately addressed, the child will be very uncomfortable. Therapists can be very helpful with input regarding positioning.

The most important thing that I have found, has been managing constipation. A child who has consistently soft stools will have an easier time developing bowel control. Many parents stop using something like Miralax when they see loose stools too early. What they are most likely seeing is overflow constipation. When the stool softener is stopped, the cycle starts again. It is very important that stool says soft, as if a child develops hard stool, they may associate pain with having a bowel movement. This can result in stool withholding. I use a picture guide for parents to show me their child’s stool consistency and I would say at least 80 % of the time there is frank constipation. The rest of the time there is variability. I generally stay away from fiber supplements in young children unless they take adequate fluids. Taking fiber supplements without fluid can lead to constipation. Fruit-eze is a natural fiber (fruit) that some children will accept.

I believe that the concept of neurogenic bladder is underestimated in children with cerebral palsy. If you have been working with your child on bladder training for 6 months and they are still having trouble initiating, I usually have parent do bladder tracking sheets and get a renal/bladder ultrasound pre and post void. This will tell me that the anatomy is fine, there is no hydronephrosis or swelling of the kidneys, and she is able to empty her bladder. If the child has urinary tract infections, further testing like VCUG and urodynamic studies might be considered.

If your pediatrician thinks that your child has voiding dysfunction, biofeedback (with games) can be helpful in learning coordination. Children usually need to be at developmental level of 6 or 7 yrs to be accepted in a biofeedback program. You could check with a local pediatric urologist to see if this is available in your area.

But again make sure constipation is addressed as it will negatively impact bladder functioning.

Re meds: Medication can effect bladder functioning. I would check with your pharmacist or doctor about your child’s medications and side effects.

It is normal to have accidents at first. The most important thing is to get the child comfortable with using the toilet and not giving negative attention to accidents. Some kids do ok with a pad in their underwear if they have a little leaking. Because toilet training can take a few months start when the home environment is calm and there are no new changes coming up.

Susan Demetrides, CRNP

Cerebral Palsy and Toileting: Helpful Products

Just for Toddlers:

• Baby Bjorn Potty Chair
• Travel Potty by Cool Gear

More Products for Children and Older:

• • Rifton Blue Wave Toileting System (now replaced by the Rifton HTS)
  • Special Tomato Potty Seats (elongated and round available)-great for travel
  • *A traveling toilet aid that has been designed but not produced . The designer will update us with further developments and is currently working on bringing is product to market.
  • Custom made cloth diaper pull ups with snaps on both sides– Especially helpful when regular diapers and pull-ups don’t work due to spasticity issues causing areas of wetness to be in non-traditional places. Also, cloth diaper pull-ups help children feel and look more like they are wearing underwear.  One of them is Snap EZ and they offer cloth diapers that offer more absorbency than most trainers since you can stuff them with an insert.
  • If you wish to purse cloth diapering you may wish to purchase a wet/dry bag.
  • Here is a fact vs fiction on cloth diapering.

Resources for Cerebral  Palsy and Toileting

• Is your child ready?

For more information about cerebral palsy and toileting, download our free cerebral palsy tool kit.