Tag Archives: Connective tissue disorders

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

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Loose joints affect emotions and behavior too!

As rehab therapists, OTs and PTs are focused on skill building and reaching functional goals with our clients.  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 presentation than 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 without the therapist’s awareness of a child’s history or current problems.
  3. Kids with hypermobility can have problems with falling and staying asleep, which affect daytime alertness and energy.  It is well-documented that a lack of good-quality sleep results in childhood behavioral changes.  Pain, lack of daytime activity levels high enough to trigger sleep, bladder control leading to nighttime awakening or bedwetting…the list of sleep issues for kids with hypermobility can be 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.
  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.  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.  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.
  5.  Children develop social and emotional skills in engagement with others.  The child who attends therapy instead of playdates, the tween that doesn’t have the stamina 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!

 

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? and Hypermobile Kids, Sleep, And The Hidden Problem With Blankets .

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Prevent Skin Injuries In Kids With Connective Tissue Disorders: Simple Moves To Make Today

Children with EDS and other connective tissue disorders such as joint hyper mobility disorder often have sensitive skin.  Knowing the best ways to care for their skin can prevent a lot of discomfort and even injury.  These kids often develop scars more easily, and injured skin is more vulnerable in general to another injury down the road.  As an OT and massage therapist, I am always mindful of skin issues, but I don’t see a lot of helpful suggestions for parents online, or even useful comments from physicians.  I want to change that today.

  1. Use lotions and sunscreens.  They act as barriers to skin irritation, as long as the ingredients are well-tolerated.  Thicker creams and ointments stay on longer.  Reapplication is key.  It is not “one-and-done” for children with connective tissue disorders.  Some children need more natural ingredients, but you  may find sensitivities to plant-based ingredients too.  Natural substances can be irritants as well.  After all, some plants secrete substances to deter being eaten or attacked!
  2. Preventing scrapes and bruises is always a good idea, but kids will be kids.  Expect that your child will fall and scrape a knee or an elbow.  Have a plan and a tool kit.  I have found that arnica cream works for bruises and bumps, even though it’s effectiveness hasn’t been scientifically proven to everyone.  Bandages should not be wrapped fully around fingers, and a larger bandage that has some stretch will spread the force of the adhesive over a larger area, reducing the pressure.  DO NOT stretch their skin while putting on a bandage.  And remove bandages carefully.  You may even want to use lotion or oil to loosen the adhesive, then wash the area gently to remove any slippery mess.
  3. If your child reacts to an ingredient in a new cream or lotion but you aren’t sure which one, don’t toss the bottle right away.  You may find that your child reacts to the next lotion in the same manner, and you need to compare ingredient lists to help identify the problem.
  4. Hydrate, hydrate, hydrate.  Skin needs water to be healthy, and even more water to heal.  Buy a fun sport bottle, healthy drinks that your child likes, and offer them frequently.
  5. Clothing choice matters.  Think about the effect of tight belts, waistbands, even wristbands on skin. Anything that pulls on skin should be thought out carefully.  This includes shoe straps and buckles.   Scratchy clothing isn’t comfortable, but it can be directly irritating on skin.  That irritation plus pulling on the skin (shearing) sets a child up for injury.
  6. Teach gentle bathing and drying habits.  Patting, not rubbing the skin, and the use of baby washcloths can create less irritation on skin.  Good-bye to loofahs and exfoliation lotions, even if they look like fun. Older girls like to explore and experiment, but these aren’t great choices for them.  Children that know how to care for their skin issues will grow up being confident, not fearful.  Give your child that gift today!

Looking for more information on caring for your child with connective tissue disorders? Check out Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health and Teach Kids With EDS and Low Tone: Don’t Hold It In!

Does your child have toileting issues related to hypermobility?  Read about my book that can help you make progress todayThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!