“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?
- 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.
- 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.
- Build more muscle strength and sensory input into the abdomen with core work and compression garments.
- 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!
- 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? .
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