Teach Kids With EDS and Low Tone: Don’t Hold It In!

People who have read my blog are aware that I wrote a book on toilet training, The Practical Guide to Toilet Training Your Child With low Muscle Tone. This comment didn’t make it into the book , but perhaps it should have. Children that have issues with muscle tone or connective tissue integrity, or both, risk current and future issues with incontinence if they overstretch these structures too far. We teach little girls to wipe front-to-back to prevent UTIs. We need to teach all children with these issues to avoid “holding it in” in the same manner that we discourage them from w-sitting.

I am specifically speaking about kids with Ehlers Danlos Syndrome, Down Syndrome and all the other conditions that create pelvic weakness and control issues. But even if your child has idiopathic low tone, meaning that there is no identified cause, this can still be a current or future problem.

The effects of low tone and poor tissue integrity on toilet training are legion. Many of them are sensory-based, a situation that gets very little acknowledgment from pediatricians. These children simply don’t feel the pressure of their full bladder or even a full rectum with the same intensity or discomfort that other children experience. They are “camels” sometimes, with no urge to pee, and have to be reminded to void. It can be convenient for the busy child to keep playing rather than go to the bathroom, or it can save embarrassment for the shy child who prefers to wait until she returns home to “go”.

This is not a good idea. The bladder is a muscle that can be overstretched in the same manner as the hip muscles that are the concern of children who “W-sit”. Don’t overstretch muscles and then expect them to work well. The ligaments that support the bladder are subject to the same sensory-based issues that affect other ligaments in the body: once stretched, they don’t bounce back. A weak pelvic floor is nothing to ignore, and age doesn’t help anyone. Ask older women who have had a few pregnancies how that is going for them. The stretch receptors in the abdomen that should be telling a child with low tone that it is time to tinkle just don’t get enough stretch stimulation to do so when they have been extended too far. The time to prevent problems is when a child is developing toileting habits, not when problems have developed.

So….an essential part of toileting education for children is when to head to the bathroom. If your child has low muscle tone or a connective tissue disorder that creates less sensory-based information for them, the easiest solution is a routine or a schedule. They use the bathroom whether they feel they need to or not. The older ones can notice how much they are voiding, and that tells them that they really did need to “go”. Understanding that the kidneys will fill up a bladder after a large drink in about 35-45 minutes is helpful. But it can be a trip after a meal, before leaving the house, or when returning home. As long as it is routine and relatively frequent, it may not matter how a toileting schedule is created. Just make sure that as they grow up, they are told why this is important. A continent child may not believe that this could prevent accidents, but a child who has a history of accidents may be your best student.

The good news in all of this? Perceiving sensory feedback can be improved. There are higher-tech solutions like biofeedback, but children can also become more aware without tech. There are physical therapists that work on pelvic and core control, but some children will do well with junior Kegel practice and some education and building awareness of the internal sensations of fullness and urgency.

Good luck, and please share your best strategies here for other parents!!

If you are interested in purchasing my book, please visit my website, tranquil babies.com, and click on “e-book” at the top ribbon. You can also buy it on Amazon.com. My e-book is designed to help parents, not just offer statements like “Don’t push your child” and “Look for signs of readiness”. That doesn’t help anyone! The book has useful readiness checklists and detailed strategies for every stage of training!

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