Why Your Kid With hEDS Doesn’t Seem to Know They Need the Potty… Right Now!



“Daddy….I gotta go.  Right NOWWWW!”

No parent wants to hear this coming from the back seat of their car while driving down a freeway or on a rural road.  But it happens.  And it can happen to older kids with hypermobile Ehlers Danlos syndrome (hEDS), well past early childhood.  It can happen to adults.  At first, it could seem that a child is intending to be troublesome, or inattentive, or demanding.

None of these reasons are as likely as having problems with sensory processing.  


And every child with hEDS has some degree of sensory registration and processing issues due to the ways that their connective tissue is dysfunctional.

Here is how this works:

Sensing elimination urgency is a process in which the outward pressure on the bladder and abdominal walls, and the perceived weight from the full bladder pressing on the pelvic floor muscles, will combine with downward pressure on the bladder sphincters to trigger sensory awareness in the brain.  The toilet-trained child or adult interprets these sensations as the need to void.


With a connective tissue disorder or low muscle tone, the sensory information about pressure from the bladder is reduced at its early stages of fullness.  Their tissues distend or stretch too gradually and easily, with less triggering of sensory receptors.  Sitting still in a car eliminates the helpful impacts of gravity and movement on sensory registration.  If a child was standing or moving around, these actions would increase sensory input and tell them it is time to “go”.  It is only when the pressure from accumulated urine is very strong that the brain registers and interprets what it now “feels”.  


And there is often very little time before that damn overflows.




Some children and adults with EDS have both weak connective tissue that distends without registering pressure, and they have low muscle tone, further limiting sensory perception.  If there are any additional issues that reduce attention, such as ADD or ADHD, this will add to the difficulty of being aware of the need to void before it is too late.


What can you do?

  1. Assume that there is decreased sensory awareness.  Blaming isn’t helpful.  Children with hEDS need to understand how their bodies work, and why they need to be proactive.  They will be more in control when they understand why these situations occur.  Read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children  for an explanation and some treatment ideas.
  2. Be mindful of everything that contributes to decreased sensory registration, and combat it effectively.  Constipation can mask sensation and weaken the pelvic floor musculature  Can You Prevent Pelvic Floor Issues in A Hypermobile Child?.  Chronically delaying voiding further stretches out the bladder, decreasing sensory registration.  
  3. Build more muscle strength and sensory input into the abdomen with core work and compression garments.  
  4. Make sure that kids use the toilet before leaving on a trip, regardless of whether they think they need to or not.  And have them take advantage of rest stops on the way.  Read Teach Kids With Ehlers-Danlos Syndrome Or Low Tone: Don’t Hold It In!
  5. Control intake to manage outflow.  They may need to time their fluid consumption so that they won’t have a full bladder in a situation where there is not access to a bathroom.  As long as they are well hydrated the rest of the day, this should not create health issues.

Looking for more posts on hEDS?  Read Why a White Noise Machine Will Help Your Kid With hEDS  and Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? .

Want more information on how to handle living with hypermobility?

I wrote two books for you!

The Joint Smart Child.inddThe Joint Smart Child.indd


My book series, The JointSmart Child:  Living and Thriving With Hypermobility, is a practical guide to success!  

Volume One addresses the challenges for children from birth to age 5, and Volume Two helps the school-aged child 6-12 manage at home, at school, and in the community.  Both books are filled with strategies to build safe independence and avoid problems before they happen.  

It doesn’t stop there.  I add chapters on how to pick the right high chairs, the right desk chairs, even the right bicycles and musical instruments.  There are chapters on how to speak with family members, babysitters, and even doctors to get the best results.  The appendices have forms that families and therapists can use in IEP meetings and medical appointments.  There are even fun activities that build fine motor control.

Both books are available as printable e-books on Your Therapy Source , a great source of books, worksheets and forms for therapists and parents.  

They are also available as a read-only e-book and as a paperback (you know you will want to write in the margins, copy pages, and highlight things, right?) on  Amazon .

By Cathy Collyer

I am a licensed occupational therapist, licensed massage therapist, and certified CBT-i sleep coach in private practice in the NYC area. I have over 25 years of professional experience in adult and pediatric treatment. It has been a joy to help people of all ages improve their ability to grow and thrive! Occupational therapists are focused on enhancing a client's functioning in everyday life. We are practical healthcare providers, interested in teaching, adapting actions and environments, and building a client's useful skills for living their best life, regardless of their challenges. I am the author of five books, including "Staying In The Room: Managing Medical And Dental Care When You Have DID" and "The Practical Guide To Toilet Training the Autistic Child". I lecture on many subjects, including sleep, trauma, and development. Contact me to learn more about how I can help you achieve YOUR goals!

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