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

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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. The issue of kids who “hold it in” didn’t make it into the book, but perhaps it should have. Children that have problems with muscle tone or connective tissue integrity (or both) risk current and future issues with incontinence and UITs if they overstretch their bladder or bowel too far. We teach little girls to wipe front-to-back to prevent UTIs. We need to teach all children to avoid “holding it in” in the same manner that we discourage them from w-sitting.

I am specifically speaking here about kids with Ehlers Danlos Syndrome, Down Syndrome and all the other conditions that create pelvic weakness and muscle control issues. But even if your child has idiopathic low tone, meaning that there is no identified cause, this can still become a 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. This is known as poor interoception, a sensory-based issue that is rarely discussed, even by parents and occupational therapists that are well versed in other sensory processing issues.  For more on how sensory problems affect toilet training, see Why Low Muscle Tone Creates More Toilet Training Struggles for Toddlers (and Parents!).   Kids that don’t accurately perceive fullness can be “camels” sometimes, holding it in with no urge to go, and have to be reminded to void. It can be more convenient for the busy child to keep playing rather than go to the bathroom, or it can save a shy child from the embarrassment of public bathrooms; she prefers to wait until she returns home to “go”.

This is not a good idea at all! The bladder is a muscle that can be overstretched in the same way the hip muscles loosen in 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. Holding it in just stretches vulnerable ligaments out.  A weak pelvic floor is nothing to ignore. Ask older women who have had a few pregnancies how that is working out for them.

The stretch receptors in both the abdominal wall and in the bladder wall 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.

When should you teach a child not to hold it in?  Right from the start.  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”.   The little ones can be rewarded for good listening.

Understanding that the kidneys will fill up a child’s bladder after a large drink in about 35-45 minutes is helpful. But it can always be time to hit the bathroom 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 is preventing accidents, but a child who has a history of embarrassing accidents in public may be your best student.

For little girls who are at a higher risk of UTIs, I tell parents to teach wiping after urination as a “pat-pat” rather than the standard recommendation of front-to-back wiping.  Why?  Because children aren’t really good at remember that awkward movement, and even if you are standing right their reminding her, she may just wipe back-to-front because that is easier and more natural.  “Pat-pat” is an easy movement and reduces her risk of fecal contamination.  I cannot tell you I have done hard research on this, but then, I have common sense.  This is the smarter way for her to wipe.  Want more info on wiping?  Check out How To Teach Your Toddler To Wipe “Back There”

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 The Practical Guide to Toilet Training Your Child With Low Muscle Tone, please visit my website, tranquil babies and click on “e-book” at the top ribbon. You can also buy it on Amazon and your therapy source. My e-book is designed to truly help parents make progress, 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.  I want children to become independent in toileting without all those tears, and for parents to feel good about guiding their kids in this important skill.

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