Tag Archives: Down syndrome

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. This toileting habit 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. This is known as poor interception, a sensory-based issue that is rarely discussed, even by Its that are all over other sensory processing issues.  These kids 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.

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, 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 equally easy and reduces her risk of fecal contamination.  Cannot tell you I have done hard research on this, but then, I have common sense.  It is the smarter move.

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.

Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children

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When most parents think of sensory processing issues, they think of the children who hate clothing tags and gag on textured foods.   Joint hypermobility, regardless of the reason (prematurity, Ehlers-Danlos syndrome, head injury, etc) can result in kids who stumble when they move and wobble when they rest.  They are seen by orthopedists and physical therapists, and told to build up those weak muscles.  Well, those kids have sensory processing issues too!   And they deserve more effective treatment than they typically receive.

Lack of joint integrity, especially decreased joint stability, results in a decrease in proprioception and kinesthesia.  These two under-appreciated senses tell a child about her body’s positions and movements without the use of vision. The literature out there is sparse. If you are hoping that a lot of research on this topic exists, and that your pediatrician understands why your child can’t get a typical grasp on a pencil but can squeeze the @@#$% out of clay, good luck. Most of the hard research has been done by PTs on proprioception in the leg, and there isn’t a lot of research done to begin with.  Essentially no research has been done on hand function or practical applications of research to living skills of any kind when it comes to hyper mobility syndromes and proprioception. But OTs know a ton about the connections between sensory processing and motor performance.  They can help your child improve skills based on their knowledge of neurology and function.

Here is a simple explanation of how proprioception and kinesthesia affect function.  Consider the process for touch-typing.  Your awareness of your hand’s position while at rest on the home row is proprioception.  You know where your movement starting and end points are via proprioception without looking.  Your awareness of the degree of movement in a joint while you are actively typing is kinesthesia.  Kinesthesia tells you that you just typed a “w” instead of an “e” without having to look at the screen or at your fingers.Your brain “knows”, through learned feedback loops, that your finger movement was too far to the left to type the letter “w”, but far enough to have been a “e”.

You are able to grade the amount of force on each key because your skin, joint and muscle sensors transmit information about the resistance you meet while pressing down each key.   Your brain compares it previous typing success and the results on the screen, and makes adjustments in fractions of a second. This is sensory processing at work.

Why do children with hypermobility have proprioceptive and kinesthetic processing problems?  Because information from your body is transmitted is through receptors embedded in the tissue within and surrounding the joints.   These receptors respond to muscle and tendon stretch, muscle contraction, and pressure within the joint.   Joint hypermobility creates less stimulation (and thus less accurate information) to these sensory receptors.  The information coming into the brain is either insufficient or delayed (or both), and therefore the output of postural stability or dynamic movement is correspondingly poor.  This shows up as a collapsed posture, difficulty quickly changing positions to catch a ball or leap over an obstacle, a heavy-footed gait, and a whole lot of other difficulties.  It can even make speech and feeding more challenging.  Read Can Hypermobility Cause Speech Problems? to learn more about the signs that your child may benefit from speech therapy as well as OT and PT.

Can children with hypermobility improve their sensory processing and thereby improve the quality of their movements in daily life?  Absolutely.  Because sensory processing is a complex skill, addressing each component of functional performance will give the hypermobile child more skills.  Building muscular strength within a safe range of joint movement is only one aspect of treatment.  Positioning a child to give them more sensory feedback while in action is essential.  Increasing overall sensory processing by using other sensory input modalities is often ignored but very helpful.  To learn more about how to help your child handle hypermobility, check out Joint Protection for Hypermobile Toddlers: It’s What Not To Do That Matters Most , Should Hypermobile Kids Use Backpacks?  and Teach Kids With EDS and Low Tone: Don’t Hold It In!  I’ll bet that you didn’t think of toileting as a proprioceptive issue.  It is an interoceptive issue, the kind of proprioception of the internal organs.  But it can be a real issue for hyper mobile kids.

I believe that vestibular input is one of the most powerful but rarely used modalities that can improve the sensory-motor performance of hypermobile children.  They don’t have to demonstrate vestibular processing deficits to benefit from a vestibular program.  The lack of effective sensory processing due to poor proprioceptive registration and discrimination creates problems with balance, and targeted vestibular input is designed to fine-tune the brain’s balance center.  I could link you to scholarly articles on this concept, but you would fall asleep before finishing them.  Trust me, vestibular input can make a difference.  This program can be done without stressing fragile joints, which is often a limitation for the programs that focus too much on muscular strengthening and stabilization activities.

My favorite sensory processing strategy for hypermobile kids?  The use of rhythmic music during movement.  Therapeutic music programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children.  Using sound to improve vestibular processing increases the quality and the speed of response to a loss of balance.  Muscle tone increases in children while they are listening through stimulation of hindbrain centers, and this combo of improved tone and improved vestibular processing helps children improve their safety while moving and even while sitting still. For all of you with kids who fall off chairs while doing nothing, you know what I mean!

It is difficult to explain to insurers and sometimes even neurologists ( don’t get me started on how hard it is for orthopedists to follow this),  but if you understand the complex processes that support sensory processing, you will be changing the background music in your clinic or your home in order to capitalize on this effect!  I recommend the Vital Links Therapeutic Listening programs for their ease of use and child-friendly music.

Children with hypermobility can benefit from occupational therapy sessions that provide more than a pencil grip and a seat cushion.  All it takes is an appreciation for the sensory effects of hypermobility on function.

Does your hypermobile child also have toileting issues?  My e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, could help you make progress today!  Many children with hypermobility also have low tone, and the theories and strategies that support stability and sensory processing are totally applicable for hypermobile kids!  This book has readiness checklists and strategies that parents can use to make real improvements in skills, not platitudes like ” read your child’s signals” and “don’t push your child to train”.  You will learn about the sensory, motor, and social/emotional issues that contribute to toileting delays, and how to select the right equipment, clothing, and more!

The Practical Guide is available on my website, tranquil babies and on Amazon , as well as at your therapy source, a great place for therapists and parents to find exercise programs and activities for children.