Tag Archives: joint hypermobility

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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When Writing Hurts: The Hypermobile Hand

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Many children resist doing their homework, but most kids say “Its so BORING!” not “My hand hurts too much”.  If a child is complaining of pain, and they don’t have a joint disease such as JRA, the first thought is hypermobility.  The good news is that there are a few fast fixes that can decrease or even eliminate hand pain.

It is rare that hypermobility in the hand is directly addressed at the preschool level unless it is generalized throughout the body or severely reduces pencil grasp.  Many children have atypical grasp patterns when they cannot achieve the required stability for a standard pencil grasp.  Children with mild instability and no other developmental issues may still be able to write legibly and even fast enough to complete assignments in the early grades.  It is when the volume of work increases or the joint stability decreases that therapists get a request for service.

Here are a few strategies that can support hypermobile kids to write with less pain:

  1. Use a tabletop easel.  These can be foldable or static.  They support not just the wrist and forearm, but also the shoulder and trunk.  The angle of an easel both supports correct wrist positioning and decreases strain on the wrist and hand.  Some easels come with clips that hold the paper, but they should be placed on an angle to mirror the natural arm position.  This will require more table space, so be aware that the size of the easel could be an issue.  Simple hack:  use a three-ring binder as an easel.
  2. Enlarge the width of the pencil shaft.  My favorite pencils for grades 1+ (see photo above) have a standard #2 lead, but a wider shaft. Joint protection principles tell us that avoiding a closed joint position should lead to less strain on joints and supporting ligament structures.  You could use some of the adaptive pens available, but I find kids reject these as looking strange.  Of course, if you enlarge the shaft oo much you will find that it is more awkward, not less.  Think of those novelty pencils you buy in gift stores on vacation.  Cute but useless.  Nobody really writes with anything that thick.  Match the child’s hand size to the pencil.
  3. Increase the texture of the pencil shaft for easier grip, less pain, and more endurance.   Everyone has seen the rubbery grips you slip onto a pencil.  You can slide 3-4 onto the entire shaft, or add some tape to create a non-slip surface.  I have been adding kineseotape or Dycem to handles this year, with good results.  You are battling grasp stability, but also fatigue.  A hand that is tired is a hand that experiences more pain.  Adding texture reduces the amount of force needed for proprioceptive registration (a fancy way of saying that kids need to squeeze to fully feel what is in their hand).  Reducing force reduces pain and fatigue.
  4. Teach pacing.  Kids think that the faster they write, the faster they will be out of pain.  Breaking up the work can have better results, but it isn’t natural for children to pace themselves.  In fact, I have never seen a young child do so.  You have to teach this to kids who likely will have joint instability throughout their school years.  A schedule, a timer, organizing assignments and breaking them down into heavy writing choices and light writing choices all help.
  5. Splinting can be a real option.  Not a heavy plastic or metal splint (usually).  A neoprene splint can be a lightweight supportive choice.  These splints are comfortable and washable.  These are affordable without insurance for most families, and your OT can help you decide if this is a worthwhile pursuit.  They are durable but easily lost by younger children, so not all families send one to school.  But the support is real, and kids that have been told for years to “fix your fingers” can feel relieved that they can now focus on writing and composing on the paper.

For more information on hypermobility, read The Hypermobile Hand: More Than A Strength Problem and For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

Looking for more assistance with hypermobility?  My new e-book is coming out this summer, and it will address the issues of the early years (0-5).  The series will continue with school age kids and teens.  But you don’t have to wait; visit my website tranquil babies and request a consultation to discuss your child’s treatment plan and make a better plan that works for everyone…today!

How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children

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Loose joints affect emotions and behavior too!

As rehabilitation therapists, OTs and PTs are focused on skill building and reaching functional goals with our clients.  But feelings influence behavior, and so therapists have to be aware of more than joints and muscles when looking at function.  In this post, I would like to address the many ways that hypermobility can create social and emotional issues for children.  Without awareness of these experiences, we cannot be the best therapists for these kids, or help parents be the best advocates for their children.

Because hypermobility varies so widely in it’s severity, it’s presentation (generalized, primarily proximal, or primarily distal) and it’s progression (decreasing with age or increasing with repeated injuries and overstretching of tissues), the psychological impact on a child will also vary tremendously.  The child who has had significant and global hypermobility from birth will have a very different profile from the young teen who is only recently experiencing functional issues with instability or pain after years of sports-related injuries.

Here are some major points to consider:

  1. Hypermobility and it’s accompanying effect of stability and proprioceptive processing contribute to both sensory seeking and sedentary behavior, sometimes in the same child.  Add in pain and fatigue, and perhaps even POTS or dysautonomia, and you have a kid that is both active and inactive, both attentive and unfocused on tasks at different times of the day.  Self-regulation appears to be very unstable.  If a child’s entire physical condition isn’t taken into assessment, a referral for an ADHD diagnosis could result.
  2. Difficulties with mobility and stability make active play and engagement in sports more difficult.  This has social as well as physical effects on children at all ages.  For some kids, they can play but get injured at a more frequent rate.  Other children aren’t able to keep up with their peers on the playground and seek more sedentary or independent activities.  And for some other kids, they experience the pain of being the last kid picked for group play or being bullied for the awkward way they move.  The child that was more mobile and athletic when younger, and is now experiencing a loss of skill or an increase in pain, is also at risk for feelings of depression and fear of movement.  That fear is a real problem, with a name: kineseophobia.   This isn’t the same as gravitational insecurity, but it may look like it  to a clinician unless that therapist is aware of a child’s history or all of the current clinical problems.  If a younger child is struggling with being active, check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility for some ideas to make things easier.  For older kids that struggle with sports, read Should Your Hypermobile Child Play Sports? because sometimes the question is how to play, not whether to play.
  3. Kids with hypermobility can have problems with falling and staying asleep, which affects daytime alertness and energy.  It is well-documented that a lack of good-quality sleep results in childhood behavioral changes for typical kids.  Pain, lack of daytime activity levels high enough to trigger sleep, bladder control issues leading to nighttime awakening or bedwetting…the list of sleep issues for kids with hypermobility can be really long.  Evaluating a child’s behavior without knowing about these issues is going to lead to incorrect assumptions about the source of reactions and interactions.  If you are a therapist: ask about sleep quality.  If you are a parent: mention sleep issues to your therapists, even if they don’t ask.
  4. Hypermobile kids can have issues with feeding that contribute to patterns of behavior that extend beyond the dinner table.  Difficulty with eating, chewing, and even constipation can result in behavioral changes.  Crankiness is only the beginning.  Imagine being constantly constipated or gagging/choking on food.  Especially with younger kids, learning social interaction skills at the table can be lost in a parent’s need to alter food choice or their concerns over nutrition.  The development of persistent oppositional behavior can begin at the dinner table and spill over into all interactions.  Hypermobile kids don’t always have issues that restrict them from eating; some kids don’t get enough exercise or find eating to be a pleasurable activity that doesn’t take too much energy or skill.  Used along with media use or gaming, snacking is something that they enjoy.  The extra weight they carry makes movement more difficult and places extra force on joints.  But exercising in pain and fatigue isn’t an easy fix.
  5.  Children develop social and emotional skills in engagement with others.  When you spend a lot of time in therapy, it eats into the time available for social skills.  The child who attends therapy instead of playdates, the tween that doesn’t have the stamina or stability to go on a ski trip, the child who can’t sit still during a long play or movie.  All of these kids are having difficulties that reduce their social interactions to some degree.  Encourage the families of the children you treat to be mindful of a child’s whole life experiences and weave interventions into life, not life into interventions.

As therapists, we owe it to our clients to ask questions that help us understand the daily challenges of life and create treatment plans that support a child’s social and emotional development.  Waiting for mental health professionals to ask those questions isn’t enough.  And remember, if there is a counselor or therapist involved, share what you know about the impact of hypermobility on behavior.  Without awareness of the physiological and sensory basis of behavior, professionals may make an incomplete assessment that will not result in progress!

 

Are you a parent of an older child with hypermobility?  Check out For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps. and Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues for some insights into positive ways to address the future.

Looking for more information on treating kids with hypermobility?  Take a look at Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets  and Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?.

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