Tag Archives: pain

Why Injuries to Hypermobile Joints Hurt Twice

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My new e-book, The JointSmart Child: Living and Thriving With Hypermobility, Volume I, is just about ready to launch.  One of the book’s major themes is that safety awareness is something that parents need to actively teach hypermobile young children.  Of course, physical and occupational therapists need to educate their parents first.  And they shouldn’t wait until things go off the rails to do so.

Hypermobile kids end up falling, tripping, and dropping things so often that most therapists have the “safety talk” with their parents on a regular basis.  What they don’t speak about as often are the long-term physical, emotional and social impacts of those injuries.

Yes, injuries have more than immediate physical effects on hypermobile kids.  Here is how this plays out:

  • The loss of mobility or function after an injury creates more dependency in a little person who is either striving for freedom or unsure that they want to be independent.  Needing to be carried, dressed or assisted with toileting when they were previously independent can alter a child’s motivation to the point where they may lose their enthusiasm for autonomy.  A child can decide that they would rather use the stroller than walk around the zoo or the mall.  They may avoid activities where they were injured, or fear going to therapy sessions.
  • A parent’s fear of a repeated injury can be perceived by a child as a message that the world is not a safe place, or that they aren’t capable in the world.  Instilling anxiety in a young child accidentally is all too easy.  A fearful look or a gasp may be all it takes.  Children look to adults to tell them about the world, and they don’t always parse our responses.  There is a name for fear of movement, whether it is fear of falling, pain or injury: kineseophobia.  This is rarely discussed, but the real-life impact can be significant.
  • Repeated injuries produce cumulative damage.  Even without a genetic connective tissue disorder such as Ehlers-Danlos syndrome, the ligaments, tendons, skin and joint capsules of hypermobile children don’t bounce back perfectly from repeated damage.  In fact, a cascade of problems can result.  Greaster instability in one area can create spasm and more force on another region.  Increased use of one limb can produce an overuse injury in the originally non-injured limb.  The choice to move less or restrict a child’s activity level can produce unwanted sedentary behavior such as a demand for more screen time or overeating.
  • Being seen as “clumsy” or “careless” rather than hypermobile can affect a child’s self-image long after childhood is over.  Hypermobile kids grow up, but they don’t easily forget the names they were called or how they were described by others.  With or without a diagnosis, children are aware of how other people view them.  The exasperated look on a parent’s face when a child lands on the pavement isn’t ignored even if nothing is said.

In my new book, I provide parents with a roadmap for daily life that supports healthy movement and ADL independence while weaving in safety awareness.  Hypermobility has wide-reaching affects on young children, but it doesn’t have to be one major problem after another.  Practical strategies, combined with more understanding of the condition, regardless of the diagnosis, can make life joyful and full for every child!

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Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?

 

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Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.

There are always a few children that have been given the BJHS diagnosis.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.  These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

Since therapists don’t provide a diagnosis, and doctors don’t provide most of the treatment these kids need, it appears to me that the only reason a doctor would use the word “benign” is that there is no disease process and there isn’t anything much that the standard ammunition doctors use (surgery and medication) can do for these kids.  It is easier than saying “I don’t have anything to offer your child except to refer to therapists and monitor until a problem that I CAN treat comes up”.

If your child has been given the diagnosis of BHJS, read more on this site about the effects of hypermobility, such as How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  There are a number of additional or alternative diagnoses that these kids eventually receive, including EDS.  If you are a parent, learn as much as you can about related diagnoses and discuss these with your therapists and doctors.  But don’t assume that what your child is experiencing is benign.

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Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

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I don’t have a good photo to illustrate this point, but if you or your child are hypermobile, you know exactly what I am talking about.  It can be any part of the body; shoulders that allow an arm to fold under the body and the child lies on top of the arm, crawling on the backs of the hands instead of the palms, standing on the sides of the feet, not the soles.

The mom of a child I currently treat told me that this topic is frequently appearing on her online parent’s group.  Mostly innocent questions of “Does your child do this too?”  and responses like “At least she is finally moving on her own”  When I met her child, she was rolling her head backward to such a degree that it was clearly a risk to her cervical (neck) spine.  We gradually decreased, and have almost eliminated, this behavior.  This child is now using it to get attention when she is frustrated, not to explore movement or propel herself around the room.

Because of their extreme flexibility and the additional gradual stretching effects of these positions, most children will not register or report pain in these positions.  Those of us with typical levels of flexibility can’t quite imagine that they aren’t in pain.  Unfortunately, because of their decreased proprioception Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and decreased sense of stability, many hypermobile kids will intentionally get into these awkward postures as they seek more sensory input.  It can actually feel good to them to feel something!

The fact that your child isn’t in pain at the moment doesn’t mean that there isn’t damage occurring as you watch them contort their bodies, but the underlying inflammation and injury may only be perceived later, and sometimes not for years.  Possibly not until tissue is seriously damaged, or a joint structure is injured.  Nobody wants that to happen. Read   Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  If you think that there is a chance that your child is more than just loose-limbed, ask your therapist to read Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? and get their opinion on whether to pursue more evaluations.  Some causes of hypermobility have effects on other parts of the body.  An informed parent is the best defense.

Here is what you can do about all those awkward postures:

  • Discuss this behavior with your OT or PT, or with both of them.  If they haven’t seen a particular behavior, take a photo or video on your phone.
  • Your professional team should be able to explain the risks, and help you come up with a plan.  For the child I mentioned above, we placed her on a cushion in a position where she could not initiate this extreme cervical hyperextension.  Then we used Dr. Harvey Karp’s “kind ignoring” strategy.  We turned away from her for a few seconds, and as soon as she stopped fussing, we offered a smile and a fun activity.  After a few tries, she got the message and the fussing was only seconds.  And it happens very infrequently now, not multiple times per day.
  • Inform everyone that cares for your child about your plan to respond to these behaviors, to ensure consistency.  Even nonverbal children learn routines and read body language.  Just one adult who ignores the behavior will make getting rid of a behavior much, much harder.
  • Find out as much as you can about safe positioning and movement.  Your therapists are experts in this area.  Their ideas may not be complicated, and they will have practical suggestions for you.  I will admit that not all therapists will approach you on this subject.  You may have to initiate this discussion and request their help.  There are posts on this blog that could help you start a conversation.  Read Three Ways To Reduce W-Sitting (And Why It Matters) and Kids With Low Muscle Tone: The Hidden Problems With Strollers  and How To Reposition Your Child’s Legs When They “W-Sit”.  Educate yourself so that you know how to respond when your child develops a new movement pattern that creates a new risk.  Kids are creative, but proactive parents can respond effectively!!joshua-coleman-655076-unsplash

Should Your Hypermobile Child Play Sports?

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This is one of the most difficult questions I field from parents of children over 5.  Every parent wants their child to receive the social, emotional and physical benefits from participating in sports.  They also know that there are greater risks for hypermobile kids.

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 appropriate):

  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 or alter safe 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 ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

 

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There is nothing worse than using a scientific study that correlates two variables and assuming causation. Translation:  If behaviors typical of disorder “A” are seen in a lot of people with problem “B”, we cannot assume that “A” is the cause of their behavior.   But we do it all the time.  People who love coffee adore studies that say coffee drinkers seem to live longer.  People who hate to exercise are validated by reports that find the number of heart attacks after exercise “is increasing”.

When it comes to labeling children’s behavior, we should take a couple of big steps back with our erroneous reasoning.  And when the label is ADHD, take three more.  Not because ADHD isn’t a big issue for families.  The struggles of kids, parents and educators shouldn’t be minimized.  We should be cautious with labels when two situations occur:  very young ages and multiple diagnoses that are determined largely by clinical observation, not testing.  Seeing ADHD in a child with hypermobility is one of those situations.

Hypermobility without functional problems is very common in young children.  Super-bendy kids that walk, run, hit a ball and write well aren’t struggling.  But if you have a child that cannot meet developmental milestones or has pain and poor endurance, that is  a problem with real-life consequences.  Many of them are behavioral consequences.  For more on this subject, take look at How Hypermobility Affects Self-Image, Behavior and Regulation in Children.

Yes, I said it.  Hypermobility is a motor problem that has a behavioral component.  I don’t know why so little has been written on this subject, but here it is:  hypermobile kids are more likely to fidget while sitting, more likely to get up out of their chairs, but also more likely to stay slumped on a couch.  They are more likely to jump from activity to activity, and more likely to refuse to engage in activities than their peers.  They drape themselves on furniture and people at times.  And they don’t feel as much discomfort as you’d think when they are in unusual positions Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

Why?  Hypermobility reduces a child’s ability to perceive body position and degree of movement, AKA proprioception and kinesthesia.  It also causes muscles to work harder to stabilize joints around a muscle, including postural muscles.  These muscles are working even when kids are asleep, so don’t think that a good rest restores these kids the same way another child gets a charge from a sit-down.

Looking for more practical information about raising your hypermobile child?

I wrote a new book for you!  The JointSmart Child:  Living and Thriving With Hypermobility is your guide to making life easier.

Read Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual!  to learn how my new e-book will build your confidence and give you strategies that make your child safer and more independent…today!  I include a brief preview and a fast link to buy my book on Amazon.com.

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When a hypermobile child starts to move, the brain receives more sensory input from the body, including joints, skin and muscles.  This charges up a sensory system that was virtually starving for information.  Movement from fidgeting and movement by running around the house are solutions to a child’s sense that they need something to boost their system.  But fatigue can set in very quickly, taking a moving child right back to the couch more quickly than her peers.  It looks to adults like she couldn’t possibly be tired so soon.  If you had to contract more muscles harder and longer to achieve movement, you’d be tired too!  Kids  develop a sense of self and rigid habits just like adults, so these “solutions” get woven into their sense of who they are.  And this happens at earlier ages than you might think.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand a bit more about this experience for hypermobile kids.

Then there is pain.  Some hypermobile kids experience pain from small and large injuries.  They are more likely to be bruised,  more likely to fall and bump into things, and more likely to report what pediatricians may call “growing pains”.  Sometimes the pain is the pull on weak ligaments and tight muscles as bones grow, but sometimes it isn’t.  Soreness and pain lead some kids right to the couch.  After a while, a child may not even complain, especially if the discomfort doesn’t end.  Imagine having a lingering headache for days.  You just go on with life.  These kids are often called lazy, when in truth they are sore and exhausted after activities that don’t even register as tiring for other children their age.

How can you tell the difference between behaviors from ADHD and those related to hypermobiilty?  I think I may have an idea.

After a hypermobile child is given effective and consistent postural support, sensory processing treatment, is allowed to rest before becoming exhausted (even if they say they are fine), and any pain issues are fully addressed, only then can you assess for attentional or emotional problems.  Some days I feel like I am living in a version of “The Elephant and the Six Blind Men”, in which psychiatrists, psychologists and pediatricians are all saying that they see issues with sensory tolerance, movement, attention, pain and social development, but none of them see the whole picture.

Occupational therapists with both physical medicine and sensory processing training are skilled at developing programs for postural control and energy conservation, as well as adapting activities for improved functioning.  They are capable of discussing pain symptoms with pediatricians and other health professionals.

I think that many children are being criticized for being lazy or unmotivated, and diagnosed as lacking attentional skills when the real cause of their behaviors is right under our noses.  It is time to give these kids a chance to escape a label they may not have.

 

Share Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? with your therapist and see what reactions you receive.  The truth is that many kids don’t get a diagnosis as early as possible.  Rare syndromes aren’t the first thing your pediatrician is thinking of, but you can raise the issue if you have more information and feedback.

Looking for more posts on hypermobility?  Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets  and Should Your Hypermobile Child Play Sports? for useful strategies to manage  hypermobility and support both physical health and functional skills.