Tag Archives: Ehlers-Danlos

Should Your Hypermobile Child Play Sports?

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Kids with hypermobility fall on a very wide spectrum.  Some are strong and flexible, allowing them to compete in gymnastics and dance with ease or even excellence.  Some kids are prone to injury; they spend more time on the sidelines than on the field.  And some need to have P.E. classes adapted for them or substituted with physical therapy.

Wherever your child lands on this spectrum of ability, it is likely that they want to be able to participate in sports, and you want them to be able to do so as well.  Engaging in sports delivers a lot of positives:  conditioning, ability to work in a group, ability to achieve goals and handle failure/loss, etc.  Most therapists and doctors will say that being as physically active as possible enhances a child’s overall wellness and can be protective. But every child is different, and therefore every solution has to be tailored to the individual.

Here are a few questions to guide your assessment  (and involve your child the  decision, if they are old enough to be reflective instead of reactive to questions):

  1. Is this activity a high or low-risk choice?  High-risks would include heavy physical contact, such as football.  Tennis requires hitting a ball with force and rapid shifts of position with lots of rotation of the trunk and limbs.  I am going out on a limb, and say that ballet on-pointe is a high-risk choice for kids with lower-body weakness and instability.  The question of risk in any activity has to be combined with what is risky for each child.  Your doctor, PT, OT or other specialist can help you identify what the risks are for your child.
  2. Will endurance be an issue, or will there be flexible breaks?  Activities that require a lot of continuous running, such as soccer and lacrosse, may be harder than dance classes.  Swimming is often suggested as an easier sport, but think about  the strokes.  Competitive swimming is a lot of resistance work against the water with repetitive motions of the shoulders.  Some strokes are more difficult than others, so examine each stroke as well as the frequency, duration and intensity your child intends to pursue.
  3. Are there ways to support performance, such as braces, kineseotaping or equipment modifications?  A great pair of skis or shoes can help tremendously in sports.  So can targeted exercises from a physical therapist or a well-trained coach that understands the needs of the hypermobile athlete.  Your child may not be able to be on a travel team due to the intense demands and greater risk of injury due to fatigue/strain, but be very satisfied being on a local team.  For the smallest kids, even changing your trike can make a difference Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility.  To remain safe in a sport, many hypermobile kids need to keep working with a PT.  Do you have the insurance or the cash to pay for this expense?
  4. Will your child report pain or injury and ask for assistance?  Will your child accept limitations on their activity level? Some kids are very proactive, and some will try to hide injuries to stay in the game or on the team.  Without this knowledge, no coach or parent is able to make the right/safe choices.  Sometimes it’s an age thing, where young children aren’t good communicators or teens are defending their independence at the cost of their health.  If you think that your child will hide injuries or push themselves past what is safe for their joints, you will have to think long and hard about the consequences of specific activities.  Read For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps. for more information about teaching your child to handle  fatigue and pain better.
  5. Within a specific sport, are there positions or types of participation that are well-suited for your child’s skills and issues?  Skiing wide green (easy) slopes and doing half-pipe snowboard tricks are at distinct ends of the spectrum, but a hypermobile child may be quite happy to be out there in any fashion without pain or injury.  Goalies are standing for longer periods but running/skating less.  Endurance running and sprinting have very different training and participation requirements.  There may be no options for a child that insists on running cross-country when their body cannot handle it.
  6. Sadly, hypermobility can progressively reduce participation in sports.  Not for all kids, and not even for kids with current issues.  Children can actually be less hypermobile at 12 than they were at 3.  They build muscle strength as well as they grow.   It can happen.  Therapy and other strategies like nutrition and orthotics can make huge improvements for hypermobile kids who want to play sports.  But too often, the child who is pain-free in dance class at 7 isn’t pain-free at 14.  This doesn’t have to be a tragedy.  Kids can be supported to adjust and adapt so that they are playing and working at their current maximal level.  Your child may find that changing sports is easier than struggling or suffering in a sport that is now difficult for them.  Good physical or occupational therapists can help you figure out how to make athletic activities fun and safe!
  7. Are you sad that they are losing their passion?  Try to separate your sadness from their sadness.  It is OK to feel your feelings.  If your child has a heritable condition such as EDS, and you didn’t know you had it yourself until your child was diagnosed, you may be feeling a great deal of (unfounded) guilt.  Even if you knew the you could pass on a HDCT, the truth is that you probably also are their greatest fan and supporter.  Your child has someone in their life who really knows what they are going through.  That is helpful, even though you might not see it right now.  Think about how you felt as a child when you didn’t understand why you were dropping things or not as skilled as other kids.  Your child knows that you know how they feel.  Working through those feelings will help you see things clearly with your own child.  Avoiding your feelings will keep you mired in them.  Only after you come to terms with how you feel will you be able to help your child see that their passions are evolving and they can create new passions in many areas.  The bigger issue is handling the feeling of vulnerability that come with chronic disorders and an uncertain future.
  8. Get your professionals to support your decisions and let them take some of the pressure off of you.  Kids are often really good at blaming parents, and parents can be vulnerable to the guilt trips kids send out.  If their doctors or therapists are telling them about the risks they face, you won’t seem like the only person that is trying to rob them of fun.  The truth is that children, including teens, cannot imagine that the damage they do today could shorten their professional career in 20 years, or contribute to surgeries in 30 years.  This is the sad truth of hypermobility:  damage is often cumulative and what is only a small discomfort today can grow into a serious loss of ability later.  No one will be able to predict your child’s future, but it is possible to identify a range of potential risks.  When you understand the risks, you are able to make decisions with more confidence.

For more information regarding hypermobility, please read Hypermobile Kids, Sleep, And The Hidden Problem With Blankets ,  Can You K-Tape Kids With Connective Tissue Disorders?  and Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?.

Is your child not a child anymore?  One issue for tweens and teens with hypermobility is looking at the future clearly in terms of jobs and careers.  Take a look at  Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues  and Teens With Chronic Illness Or Disability Need A Good Guide: Read “Easy For You To Say” for some strategies to help your child think clearly but positively about their future.

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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, hypermobile kids have sensory processing issues too!   And they deserve more effective treatment for these issues 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 grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.  Who will understand you?  Your OT.

Most of the hard research into proprioception and hypermobility has been done by PTs and focused on proprioception in the leg. They are interested in how it affects mobility.  The problems with poor proprioception and kinesthesia go far beyond walking.  Essentially no research has been done on hand function or the practical application of research to living skills of any kind when it comes to hypermobility syndromes and proprioception. But OTs can teach you and your child’s classroom staff 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”.  Teachers and others call this “muscle memory”, but that is a misnomer.  Muscles have no memory; brains do.  And brains that aren’t getting the right information send out the wrong instructions to muscles.  Oops!

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.  Like the game at the carnival, the ball isn’t hit hard enough to ring the bell at the top of the post.  The sensory information coming into the brain is either insufficient or delayed (or both), and therefore the brain’s output of directions to achieve 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.  One of the most common issues are the awkward or extreme positions these kids get into, and sometimes strongly prefer.  They look like they should be in pain, but they aren’t.  Read more about what to do when your child insists on sitting in a position that could harm them in Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way.

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.  If your child is experiencing difficulty in gym or playing sports, please read Should Your Hypermobile Child Play Sports? for some useful ways to think about what you say to your child.  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   Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way and Hypermobile Kids, Sleep, And The Hidden Problem With Blankets.  

I’ll bet that you didn’t think of toileting as a proprioceptive issue.  When thinking about toileting the hypermobile child, the biggest problem is often an interoceptive issue; the kind of proprioception that involves internal organs.  This can make it difficult for hypermobile kids to feel when they need to “go” in time to get to the bathroom, but it can also create retention.  The urge isn’t very powerful for them. Read For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and Teach Kids With EDS Or Low Tone: Don’t Hold It In!.  And of course, you might want a book that will help you with toilet training.  I wrote it for youThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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  midbrain 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!  I have been trained in the use of Therapeutic Listening through Vital Sounds, and I have recently been trained in the use of Quickshifts.  These short pieces of music that entrains both sides of the brain for activation and attention can really make a change in hypermobile kids.  There are other programs that work well too.  I prefer Vital Links’ Quickshifts for greater options and ease of use in a daily schedule Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  The most significant benefit to adding a listening program to a home program for any child or adult is that there is no stress on connective tissue, even for kids that are in a lot of pain and have very limited mobility.  For kids that have POTS as well as hypermobility, this can be a real advantage.  The middle ear is connected intimately to the vagus nerve, which impacts the autonomic nervous system.  Treatment of the vestibular system can directly improve the ability of the autonomic nervous system, without the risks associated with many activities.

Another technique to enhance sensory processing is the Wilbarger Protocol.  Although not created for children with hypermobility, I believe that it can be altered to address poor proprioceptive discrimination in specific conditions such as EDS.  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for a look at how I adapt the protocol with safety in mind.

Kineseotape can be helpful to provide some of the missing proprioceptive information.  When your child has a connective tissue disorder, or is under the age of 3, skin issues complicate taping.  Read Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? for some suggestions to make this treatment more effective and less risky.

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, 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.  Read more about it, and hear what parents have to say about this unique e-book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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