Category Archives: hypermobility

Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

enis-yavuz-387710-unsplashThe short answer:  some of these kids, some of the time.  The long answer:  To use K-tape effectively, you need to understand the mechanics of tape on the skin and underlying tissues, how connective tissue disorders disrupt skin healing, how to minimize skin shear and inflammation, and that only using one type of tape may not be enough.

I love to use taping for kids with hypermobility, but kids with connective tissue disorders such as Ehlers-Danlos syndrome aren’t always able to tolerate taping without some significant adaptations.  Children that were preemies often have the same issues that make taping more challenging.  Fragile skin, immune system reactions, etc. will require adaptations and alterations to standard taping procedures and protocols.  But it doesn’t mean an automatic “no”!

Here are my clinical suggestions to make K-taping more successful for kids with connective tissue distorders:

  1. Very few children with connective tissue disorders are able to communicate discomfort clearly. Their hypermobility creates limitations in proprioceptive and kinesthetic awareness.  Children of all ages with poor proprioceptive discrimination have a sensory deficit that directly reduces their feedback for taping.   Therapists have to be very skilled at observation and clinical judgement.  A good therapist will carefully listen to a parent’s descriptions of movement, skin conditions and complaints to hear clues that should guide your taping.
  2. Assume significant skin sensitivity and fragility.  If a child sails through your test tape period, don’t assume that you can use regular taping procedures and protocols.  Always use a test tape, and consider doing multiple test tapes in different locations and with different levels of tension.  Paper-off tension is highly recommended in treatment, and so is caution with taping protocols that add significant skin shear.  Those include placing the tissue on stretch as you apply the tape, and protocols in which rotary force is exerted (such as spiral patterns around limbs).  Because skin recovery may be impaired, skin tolerance can deteriorate after repeated taping.  Use the most conservative treatment plan, even if you are getting good results.  Slow and steady is better for everyone.
  3. Expect to take taping breaks and shorten the amount of time tape stays on the skin. These kids should receive longer periods without tape.  This allows any micro-damage to be repaired.  Once the tape has lost the majority of it’s elastic properties, it is less beneficial and becomes more of a risk for skin integrity.  Instruct parents to trim the tape or remove it completely when the edges start to catch on clothing.  The effect is constant shear on the skin next to the loose edge.  This is irritating for all kids, but it can create significant inflammation for kids with CTD’s.  Try taping another location and returning to taping after a substantial break.  Children with connective tissue disorders usually have more than one area of instability that could benefit from taping.
  4. Use pediatric tape and pediatric protocols well into childhood and perhaps beyond.  I use the Milk of Magnesia barrier technique with all children under 3, and with all children with diagnosed or suspected connective tissue disorders.  I am also a big fan of PerformTex’ pediatric tape.  Their adhesive seems to be to be less intense than ROC Rx tape, and significantly less adhesive than regular tape.  The cure monkeys and flowers don’t hurt!  Once I started using pediatric tape, I haven’t looked back.  No parent wants to see their child’s skin inflamed, and no therapist wants to strain their client’s trust by appearing to be unconcerned about skin integrity and pain.
  5. Expect that some children truly cannot tolerate taping, and move on.  Good therapists have many different ways to make a difference in a child’s life, and taping may be tolerated better as a child grows up.  We can never predict the clinical course of a connective tissue disorder with certainty, so don’t give up, but don’t become rigid in your treatment planning either.

Looking for more information on treating hypermobility and hypermobility syndromes? Check out How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children.  I am working on an e-book series for parents and therapists of kids with hypermobility.  Check back here soon to see when and where it is available!

 

My e-book on potty training, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, is a great reference for therapists and a helpful resource for families.  Many of our hypermobile preschoolers are still in pull-ups because no one knows how to make it easier.  My book has readiness checklists and equipment assessment guides that can help kids move forward with training immediately!  Visit my website to purchase my book at tranquil babies, or go to Amazon , or visit Your Therapy Source, a wonderful site for therapy materials.

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Which Improves Pencil Grasp Best: A Pencil Grip Or A Thicker Pencil?

 

kelli-tungay-324329A a pediatric occupational therapist, I am often asked to weigh in on this debate.  Not often enough, it seems.  There are a lot of kids out there using pencils with wonky grasp patterns because no one has made an effort to improve the way they hold a pencil, or they doubt that it matters.  Oops.  Although grasp isn’t often or evn usually the biggest issue with writing problems, a really poor grasp can reduce control and increase pain and fatigue.  Not every kid with poor pencil grasp is a hot mess.  Some of them just need good instruction and good materials.  For the others, it might be time to get an OT involved.

Kids that struggle with pencil grasp are often (in my opinion, too often) given a pencil grip and told to use it when they write. It may help, but it may not.  An yet, I will still hand out my favorite pencil grip if I think that it will build control and strength. The Pencil Grip That Strengthens Your Child’s Fingers As They Write.

I thought I would drill down into the ways that OTs think about the use of pencil grips, and present a few alternatives to reflexively sending kids home with a bit of plastic on the end of a pencil:

  • Change the pencil.  Triangular pencils give more sensory feedback during writing, and they offer a flat surface for finger pads.  Thick mechanical pencils still have a standard-thickness lead, but they also are easier to hold for some children.  Short pencils, including golf pencils, force more fingertip contact and can be helpful (but not if grasp is really weak or awkward).
  • Don’t jump into pencil use too early.  Until a child can manage a mature grasp, I try very hard to keep them using crayons when they are not yet in kindergarten.  I like the flip crayons from Learning Without Tears because they are so very small, but not all kids in kindergarten are ready for them.  I break a toddler crayon in two so that they get the benefits of a thick shaft but they will be unable to use a fisted grasp.
  • Like markers?  I only use them if they are the Pipsqueak markers from Crayola.  Nice thick, short shafts for little fingers.  Markers don’t give a child any resistance at all, so they don’t give enough sensory feedback or strengthening for my kids that need both.  And they make a mess most of the time.  I don’t have the time to scrub off markers.
  • Build strength and control with play.  Yes, fine motor play.  Totally outdated (just joking) but necessary.  I use the iCreate tablet stylus, bead stringing, therapy putty and lots of tiny toys like travel Connect Four games.  Even baking.     Utensil use counts too. How Using Utensils To Eat Prepares Your Child To Write    Children are spending less time with toys and more with tablets, so I insist that they use a tablet stylus with me in sessions.  They have no idea that the physical “drag” of the plastic point on the glass screen as they move objects around is creating resistance that helps their fingers get stronger.
  • Color with children, draw with children. A lot.  Coloring is less stressful to the risk-averse child who thinks he can’t write. Drawing simple shapes is directly applicable to writing letters and numbers.  Think “T” and a vertical cross, “A” and a volcano.  Watching an adult and listening to their narration, such as ” I am coloring around and around to fill in the balloon, since it is a circle shape”  is very helpful to young children who resist direct instruction.  The child that doesn’t naturally gravitate to coloring may need downloads of their fave character or stickers to add to the picture to make it exciting.  But the key is the adult interaction.

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For Kids With Sensory and Motor Issues, Add Resistance Instead of Hand-Over-Hand Assistance

 

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One of my most popular posts, Why “Hand-Over-Hand” Assistance Works Poorly With So Many Special Needs Children , explains how this common method of assisting children to hold and manipulate objects often results in rejection or even aversion.  This post tells you about my most successful strategy for kids with low muscle tone and limited sensory processing:  using graded resistance.

Why does making it harder to move work better?  Because if the child is actively trying to reach and grasp an object, you are providing more tactile, kinesthetic and proprioceptive information for their brain.  More information = better quality movement.  Your accurately graded resistance is doing what weighted/pressure vests, foot weights and SPIO suits do for the rest of their body.  Could you use a hand weight or weighted object?  Maybe, but little children have little hands with limited space to place a weight, and weights don’t distribute force evenly.  Did you take physics in school?  Then you know that gravity exerts a constant pressure in one direction.  Hands move in 3-D.  Oh, well.  So much for weighting things.

How do you know how much force to use?  Just enough to allow the child to move smoothly.  Its a dance in which you constantly monitor their effort and grade yours to allow movement to continue.

Where do you place the force?  That one is a little trickier.  It helps to have some knowledge of biomechanics, but I can tell you that it isn’t always on their hand.  Not because they won’t like it, but because it may not deliver the correct force. Often your force can be more proximal, meaning closer to the shoulder than the hand.  That would provide more information for the joints and muscles that stabilize the arm, steadying it so the hand can be guided accurately.   If a child has such a weak grasp that they cannot maintain a hold while pushing or pulling, you may be better off moving the object, not the hand,  while they hold the object, rather than holding their hand.

Still getting aversive responses from the child?  It may be because the child doesn’t want to engage in your activity, or they don’t realize that you are helping them.  They  may think that adults touch them to remove objects from their grasp or otherwise stop them from exploring.  Both can be true.  In that case, make sure that you are offering the child something that they want to do first.  Remember, we can’t force anyone to play.  The desire to engage has to come from them, or it isn’t play.  Its just adults making a kid do something that we think is good for them.

 

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One of the most amazing places I have ever seen:  Australia!

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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OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues

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Does your child knock over her milk on a daily basis?  Do utensils seem to fly out of your son’s hands?  I treat kids with hypermobility, coordination and praxis issues, sensory discrimination limitations, etc.; they can all benefit from this terrific line of cups, dinnerware and utensils.

Yes, OXO, the same people that sell you measuring cups and mixing bowls: they have a line of children’s products.  Their baby and toddler items are great, but no 9 year-old wants to eat out of a “baby plate”.

OXO’s items for older kids don’t look or feel infantile.   The simple lines hide the great features that make them so useful to children with challenges:

  1. The plates and bowls have non-slip bases.  Those little nudges that have other dinnerware flipping over aren’t going to tip these items over so easily.
  2. The cups have a colorful grippy band that helps little hands hold on, and the strong visual cue helps kids place their hands in the right spot for maximal control.
  3. The utensils have a larger handle to provide more tactile, proprioceptive and kinesthetic input while eating.  Don’t know what that is?  Don’t worry!  It means that your child gets more multi-sensory information about what is in her hand so that it stays in her hand.
  4. The dinnerware and the cups can handle being dropped, but they have a bit more weight (thus more sensory feedback) than a paper plate/cup or thin plastic novelty items.
  5. There is nothing about this line that screams “adaptive equipment”.  Older kids are often very sensitive to being labeled as different, but they may need the benefits of good universal design.  Here it is!
  6. All of them are dishwasher-safe.  If you have a child with special needs, you really don’t want to be hand-washing dinnerware if you don’t have to.

For more information about mealtime strategies, please take a look at Which Spoon Is Best To Teach Grown-Up Grasp? and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child.

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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.
  2. Will endurance be an issue, or will there be flexible breaks?  Activities that require a lot of running, such as soccer and lacrosse, may be harder than dance classes.
  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.
  4. Will your child report pain or injury and ask for assistance?  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.
  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.
  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.   It happens.  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.  Good physical or occupational therapists can help you figure out how to make athletic activities fun and safe!

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?.

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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 their treatments don’t include addressing their sensory processing issues. The Ehles-Danlos Syndromes (yes, there are more variants than just vascular and hypermobile!) are somewhat rare connective tissue disorders that can create generalized joint hypermobility.   Kids with EDS are often diagnosed as having a coordination disorder before they get the EDS diagnosis, and their families describe them as “clumsy” or even “lazy”.  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 it can make long-term alterations in the brain’s ability to use sensory input for movement and state control.  The Wilbarger Protocol involves skin brushing and joint compression in a carefully administered method that uses the “gate theory” of sensory processing 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 of children with EDS 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.  My advice: 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 dual licenses in massage therapy and occupational therapy.  Being able to feel correct 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 the use of a home program.  This has only happened once in my career.  A mom was truly unable to perceive the amount of force she was using.  She admitted that this had been an issue for her since childhood, and I suspected that she had her own sensory processing issues.  We moved on to other treatment choices.  There is never a reason to stick with a treatment that causes a risk to a child or makes a parent feel like they are a failure.  Ever.

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.

Looking for more than blog posts?  Visit my website tranquil babies and purchase a phone/video session to discuss your concerns and learn about what occupational therapy has to offer your child!

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