Category Archives: hypermobility

Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

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My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often treatment doesn’t include addressing sensory issues. Ehles-Danlos Syndrome is a somewhat rare connective tissue disorder that can create generalized joint hypermobility.  These kids are often diagnosed as having coordination disorder, and their families describe them as “clumsy”.  I see them as having sensory processing issues as well as neuromuscular and orthopedic issues.   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.

There are some caveats in using techniques from sensory integration protocols with this population.  This doesn’t mean “no”; it means think about it first.  The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.

The Wilbarger Protocol:

For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation.  Created by Patricia Wilbarger, a terrifically talented OTR  who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and long-term alteration in the brain’s ability to use sensory input in movement and state control.  It involves skin brushing and joint compression in a carefully administered method that uses gate theory to assist the nervous system in regulating awareness and arousal.

There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation.  But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.

Adapting the Protocol for Ehlers-Danlos Syndrome

Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin while still gaining benefit from this technique:

  • Reconsider using the brush.  Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average.  It can bruise and tear more easily, especially with the vascular or classic EDS subtypes.  Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising.  Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied.  This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children.  Go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
  • Make sure that you are well-trained in the positioning and administration of joint compression.  I have taken joint mobilization training courses, as well as having a licenses in massage therapy and occupational therapy.  Being able to feel joint position and alignment is absolutely key when children have loose joints, so use this technique with care.  Avoid painful joints, and limit repetition to the shortest amount needed to see a clinically meaningful response.
  •  Train parents extremely well before recommending home use.  Most parents can learn this technique with the right explanation and some practice.   If a parent seems unable to perform joint compression correctly, reconsider a home program.  This has only happened once in my career.  A mom was unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood.  We moved on to other treatment choices.

The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base.  I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.

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Hypermobile Kids, Sleep, And The Hidden Problem With Blankets

 

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Everyone knows that sleep is important.  Research in sleep science (yes, that is a thing) tells us that our brains are working to digest the day’s learning, the immune system is active during sleep, and our bodies are repairing and renewing tissues and organs while we slumber.  As much as we need sleep, kids need it more.  They are building the brains and bodies they will carry into their future.  Children need good quality sleep as much as they need healthy food.

Helping children to sleep well is usually a combination of creating good and consistent bedtime routines, giving them a full day of physical action and warm social interaction, and developing a healthy sleep environment.  This means providing a sleep-positive environment and removing any barriers to sleeping well.  But giving kids the chance to get a good night’s sleep can be harder when a child has hypermobility.

Some of the challenges to sleep are sensory-based, and some are orthopedic.  Here are a few things that make sleep more challenging for these kids:

  • Children with limited proprioception and kinesthesia due to low tone or excessive joint mobility can have difficulty shifting down into a quiet state for sleep.  They spend their day seeking sensory input;  not moving reduces the sensory information that makes them feel calm and organized.  To understand more about the sensory concerns of hypermobility, take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.
  • Some hypermobile kids have joint or muscle pain that keeps them up or wakes them up.
  • Hypermobile kids can get arms and legs caught in their bedclothes or between crib slats and mattresses.  Any layer can be a potential problem, from the top sheet to the decorative afghan that Granny sent for his birthday.
  • Limbs can slide off the mattress during deep sleep and create strain on ligaments and tendons.   You and I depend on our brain to perceive an awkward position and take corrective action.  The same child who “w” sits and slides off a chair without noticing is not going to wake up when her arm is hanging off the bed during sleep, even though the tissues are stretching beyond their typical range of motion.

Here are some simple strategies that may improve your child’s sleep:

  • Try a duvet or a flannel sheet set to minimize the number of layers of bedclothes.
  • Use a rashguard suit instead of pajamas.  I am particularly fond of the zip-front style so that less force is needed to get arms in and out while dressing.  You can peel it off more easily.  The lycra creates sensory feedback that can support body awareness while keeping them cozy.  An all-in-one suit also gives a bit of support so that limbs don’t easily overstretch.  A little bit of proprioceptive input in a breathable fabric that can also generate a bit of neutral warmth (from body heat) to keep tissues from getting too stiff.
  • Avoid footie sleepers that are too short.  Too-small footie sleepers create compressive forces on joints and could even encourage spinal torque.  Hypermobile kids will be the last ones to complain since they often don’t feel discomfort right away.  My preference is not to use these sleepers at all with hypermobile kids or kids with low tone.  See the next suggestion for another reason why I feel this way.
  • Make them take off those footie sleepers when they wake up and walk around.  As fabric twists and children stand/walk on the fabric, not the soles, it creates a safety risk underfoot.  Less sensory feedback and slippery soles!!  Get them dressed once they wake up.
  • Carefully consider weighted blankets.  Originally sold for kids on the autistic spectrum and for kids with sensory processing disorders without muscle or orthopedic issues, these blankets have become popular with other groups.  The biggest concern is that placing weight (meaning force) on an unstable joint over time without conscious awareness or adult control is a safety issue.  It is possible to create ligament injury or even subluxation of a joint, depending on limb position and the amount of force placed on a joint.  Talk this one over with your OTR or PT before you order one of these blankets.
  • Consider aromatherapy, gentle massage, white noise machines, and other gentler sleep strategies to help your child sleep well.  For kids who sleep well but wake up stiff, learn how to use gentle massage and possibly heat to help them get going.
  • Try K-Taping or Hip Helpers for stability.  Kineseotape stays on for days and gives joint support and sensory input while your child sleeps.  Hip Helpers are snug lycra bike shorts that limit extreme hip abduction for the littlest kids  (legs rotate out to the sides excessively).  They gently help your child align hip joints correctly.  As with weighted blankets, I strongly recommend consulting with your therapists to learn about how to use both of these strategies.  When used incorrectly, both can create more problems for your child.

 

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Potty Training Boys: Do You Teach Standing Up Or Sitting Down?

 

darran-shen-477150.jpgTraining children for bladder control before bowel control is often easier for quite a few reasons:  More frequent bathroom trips = more opportunities for success, digestion and diet issues don’t stall success,  and urination is usually a painless, phobia-free, and quick experience.  In general, families that hire me as a consultant are encouraged to consider bladder training to be the first mountain to conquer.

But should little boys sit or stand to do the deal?  After a child has been sitting on the potty, understands it’s use, and has consistent success, I will encourage parents to have their sons stand to urinate.  But it isn’t as simple as that.  There are pros and cons.

First, the pros of standing to urinate:

  • little boys have probably seen their brothers, cousins and dad use the toilet, and most children want to copy their same-gender parent.  This is often more motivation to become independent in the bathroom.
  • young children may be a little more mindful of why they are standing in front of the toilet.  Children that are sitting have a harder time seeing what is happening and can get distracted. I know, I know, even the “big boys” can have terrible aim.  But children need all the help they can get to stay focused.
  • improving aim is motivation to use the toilet.  I wrote a blog post on using targets to teach boys to improve their accuracy and build interest in toileting.Piddlers Make Potty Training Fun!  These really work!

And now the cons:

  • See the item about distractibility under “pros”.  Some boys are so distracted that sitting on an toilet seat insert with a splash guard is the only way to prevent spraying the bathroom and any supervising adult.
  • Some children will start out urinating and begin to have a bowel movement concurrently.  Oops!  These children often have issues with low tone or digestive problems, and cannot “hold it” long enough to finish urinating and then sit on the toilet to have a bowel movement.  If they have an accident, it could be very upsetting to them and make them less eager to be fully trained.
  • Children with low muscle tone or postural stability issues may need to sit to achieve a safe and stable position.  No one can eliminate when they are unsteady or fearful.

Some children are vocal and clearly tell you what they want to do and why.  Some cannot or will not communicate, but you can figure out what they are thinking.  Some need to be encouraged to give standing a try.  If your son was initially interested and now has lost some of his enthusiasm and is still sitting to urinate, try telling him that it is time to stand like the big guys and see if you can regain some of your momentum in toilet training!

For more information on toilet training children with low muscle tone, check out my other posts such as   Low Tone and Toilet Training: The 4 Types of Training Readiness   as well as my useful e-book.  Here is a post that explains why this unique book will help you move forward with training right away! The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

 

Therapists often recommend these well-designed seats for kids that need solid foot support, but even the best hip and chest strapping doesn’t always mean that a child is actively using their feet for postural control.

As a young therapist, I used tape, foam, and towel rolls everywhere, as if I was creating a modern sculpture.  For the most part, all I got for my effort was frustration.  Food and force tend to make short work of the most ingenious wedges and supports on a chair used for feeding.  Then I got smarter and decided to make this a lot easier on everyone.

I wanted to share my easiest strategy for helping children place their feet on a foot plate and keep them there:  shoes!

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The little guy in the “before” photo has generalized low tone and hypermobility.  His pelvis is reasonably stable using the existing straps on the chair, and he is able to reach forward to finger-feed, partially activating his trunk and hip musculature.  But those feet just tapped away on the footplate, and his legs remained extended at the knee through most of the meal.  He is too little to respond to any verbal prompts for posture, but not completely addicted to gaining sensory input though his feet.  He is there for the food, and the foot movements were his way of gaining sensory input and entertaining himself!

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Non-skid soles, and totally stylish, too!

Just putting on his tiny boat shoes gives him some “grip” on the foot plate, and he stayed in this position for the rest of the meal with our repositioning his body at all!  He still has to develop some hip control so his knees don’t move laterally as he reaches forward.  Using shoes with non-skid soles is an easy hack to help him get some distal stability without constantly touching and repositioning him.  Kids that get a lot of therapy and need almost total help for toileting and dressing really start to hate all our manhandling after a while.

Hope this gives parents and therapists an idea that requires very little effort and can  deliver immediate results!

Wondering how you are going to deal with potty training?  Check out my new e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  There is so little useful advice out there for parents of children with hypotonia!  My book as checklists and specific strategies for pre-training, choosing equipment such as seat inserts, and covers the sensory and social/emotional consequences of low tone as it relates to learning this important life skill.

My book is available on my website tranquil babies, at  Amazon and on Your Therapy Source, a great resource for pediatric therapy materials.  Coming soon:  my next book on raising a child with hypermobility.  It will include strategies for positioning, play, ADLs, and school activities.  My web designer suggested that I should add short videos so that you can see demonstrations and equipment/toys that make life easier for everyone!  Please submit comments if you have your own suggestions to make this book a great resource for parents and therapists!

Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?

 

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They are everywhere; colorful therapy balls have migrated from the clinic to the classroom.  You can buy a base or a whole chair with a ball attached.  But do kids with hypermobility benefit from using them, or will they create more problems than they solve?

Hypermobility in infants and very young children is common, and decreases over time in typical children.  And then there are the kids with low muscle tone or connective tissue disorders.  These kids do not commonly see a decrease in their loose joints over time.  They do become stronger, and they can become more stable and steady.  But they can still display considerable flexibility over time.

In fact, hypermobility can increase with each overstretched ligament or damaged joint.  It is as simple as basic construction principles:  when the foundation is shaky, the structures around the foundation receive some of the forces from action and movement that the foundation should have absorbed.  A child who has an unstable pelvis will experience more forces in their upper spine and in their knees as the muscles try to compensate for the extra movement at the pelvis.  Over-stretching, excessive tightening of the wrong structures, and damage to joint surfaces are the result of excessive force absorption.

In this situation, another symptom becomes more and more obvious:  fatigue.  Well-aligned joints are designed to decrease effort during movement, like a Swiss clock.  Damaged joints and joints that don’t glide correctly due to lax ligaments and weak muscles require more effort to do the same job.  Hence fatigue sets in just from the extra effort required.  This is true even if the connective tissue that creates muscles and ligaments is of good quality.  Some genetic connective tissue disorders are characterized by incomplete or faulty construction of connective tissue.  These children are starting out with a foundation that is unstable and weak before any forces have been applied.  They will become weak and tired more quickly than a child with the same level of instability but with stronger connective tissue.

While sitting on a therapy ball-chair, the expectation is that the dynamic movement of the ball will activate core musculature and provide a dynamic position that helps a child  achieve core stability.  Sounds great!  But…this assumes that the physical structures needed are capable of doing so, and that the child is also able to write or play, using his arms and hands effectively at the same time.  It also assumes that the child will notice when his alignment has decreased and will take action to prevent compensation.  I think that is a lot to ask of most kids, even most teens.  They just want to get their homework done and over.

Based on all of these concerns, I recommend that children with hypermobility be closely evaluated and monitored by a therapist before they use a therapy ball set-up as a chair for play or schoolwork.  The extra effort to sustain and achieve good alignment is likely to be difficult to manage as they concentrate on a task like handwriting.  The risk is that they fatigue the supporting musculature, recruit compensatory muscles for support, and place more strain on joints and ligaments without awareness.  Yes, I am saying that there is a chance that the use of these chairs with some kids can make things worse.

A better idea for kids with hypermobility?  A more supportive seating set-up.  Reduce the physical demands while your child is working, and leave exercising on a ball to therapy sessions and your therapy home program.  Therapists are skilled at designing programs that target specific muscles to develop balanced control around a joint while protecting it at the same time.  They are also great at assessing work stations and chairs to determine which designs will give your child support and dynamic positioning at the same time without excessive fatigue.  This is one of my favorite tasks as an OT.  I know that a well-designed seating set-up will provide a pay-off every time a child sits down for a meal, plays at a table, or does their homework.  Sometimes it means that joint protection and support have to be blanked with dynamic control, and my training helps families to parse it out for the best result possible for their child.

Looking for more ideas with your hypermobile child?  Check out Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Should Hypermobile Kids Use Backpacks? to start the school year.

I am working on a new e-book on hyper mobility, and welcome parents and therapists to suggest topics that are rarely discussed online or in the clinic.  My goal is to create a book that helps kids thrive!

 

 

Halloween Fun When Kids Don’t or Can’t Trick-Or-Treat

 

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Kids big and little are anticipating Halloween, but this holiday isn’t always enjoyable for children with ASD, SPD, anxiety or motor issues.  Putting on a costume can be difficult for some kids to tolerate and nearly impossible for kids that have mobility issues.  Kids with endurance and mobility issues struggle to walk up to a front door and ring the bell, but they don’t want to be carried “like a baby”.  Even seeing other children in costume or decorations in their own home can be difficult for children that are very sensitive.

What begins as a celebration and an adventure becomes a minefield.  And yet, your child may be invited to participate in many Halloween events.  You may want to have a party in your own home.  Your child may even beg to be involved in things you know they will end up hating, not realizing the challenges ahead.  Inclusion is a murky pond for some kids.

Perhaps it doesn’t have to be so difficult.  Here are a few ideas that could make this holiday less stressful and more inclusive:

  • Costumes can be anything you want them to be.  Purchased costumes can be adapted or altered for comfort and tolerance.  If you have a child with tactile sensitivity, choosing the fabric that is less irritating is worth a trip to a brick-and-mortar store, or ordering multiple sets online with easy returns.  Instead of an eye patch for a pirate, you can use makeup to create one.  Princess skirts and Batman pants can be shortened to prevent tripping.  They can be bought larger and altered to allow for braces and for sitting in a wheelchair.  Hats and headpieces are optional, and can also be switched out for more wearable choices.  They can be purchased separately or by combining two costumes.  A comfortable costume is fun; an awkward costume will cost you in time, pain and struggle much more than you can imagine.
  • Trick-or-treat is over-rated.  Choose people your child knows, a neighborhood that has flat, accessible front steps, or even an apartment building with an elevator.  The experience of trick-or-treat doesn’t have to be a marathon to be fun: in fact, “fun” is the opposite of dragging stressed children around from house to house.  Remember that children with sensory modulation issues will start out excited and happy and become overwhelmed quickly.  Monitoring and planning for this helps both of you have fun that doesn’t end badly.
  • Many children with sensitivities need to practice wearing their costume until it becomes familiar.  They may protest and initially refuse, but some practice can really help them.  Make the run-through more fun by pairing it with something like watching a halloween movie at home or putting up decorations.  The child that refuses to wear a costume can become the child who doesn’t want to take it off!
  • Choose your home decorations with your child’s tolerance in mind.  It isn’t always about whether they are scary or not, it can be the brightness, the amount of movement or the sounds that overwhelm children.  You won’t always know what will be too much, so prepare yourself and the rest of the family that you may have to substitute/remove/repurpose things that don’t work out.
  • Do fun events that your child can handle.  Bake cookies, including the buy-and-bake-off cookies that don’t require a lot of effort or time.  The end product can be given to friends and family proudly.  Decorate a Halloween cookie house.  Put up cling-on decorations in windows and storm doors that are easy to remove if they become an issue.  Watch a fun movie at home and invite friends to dress up and come over for the show.

Holidays for kids with special needs take more thought, but they don’t have to be less fun, just a bit different.  The important concept is to consider your child’s needs and aim for the essential feelings of the holiday:  fun, and sharing the fun with others!

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.

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.

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.

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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.

When a hypermobile child is given effective and consistent postural support, 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 problems.  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.

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 Hypermobile Kids Use Backpacks? for useful strategies to manage  hypermobility and support both physical health and functional skills.