Category Archives: hypermobility

For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go see how cold the snow is outside! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength ProblemShould Your Hypermobile Child Play Sports? and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

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Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues

 

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It is graduation time here in the U.S.  Kids (and parents) are thinking about the future.  But when your teen has chronic health conditions, the future can be uncertain and the decisions more complicated.  I know that the saying “Do what you love and you won’t have to work another day of your life” is very popular, but the truth is that career planning is much more than finding your passions.

Here are a few things to think about:

  1. Every teen needs to learn about their interests and their skills.  Regardless of medical concerns or limitations, picking a career path that doesn’t match any strong interests is a plan almost certain to fail.  There is a medical reason to pick a career that they don’t hate;  if the greatest part of the day or week will require them to do tasks they dislike or find boring, they are at risk for stress-related flares in their condition. Similar concerns exist when a career choice doesn’t match their skills.  Loving what you do but not having the right skills or talents is very frustrating.  It could be harder to get and keep a job without good skills.  Help your teen identify what interests them about life and school, and where they truly shine.  If your teen hasn’t had a chance to observe people working in the profession(s) they find interesting, make sure that they do so before they invest time and money in training.
  2. Look at potential careers with an eye to benefits, job demands and scheduling flexibility.  Most adults with chronic health conditions want to be employed, and every one of them will need health insurance.  In the U.S., that means finding a job that provides insurance or purchasing individual coverage after aging out of family policy coverage options at age 26.  Generous sick days and personal days are perks every employee desires, but for people with a chronic illness, those benefits allow for medical treatments and rest during periods of symptom flares.  Think carefully about the working environments common to a particular career path.  Some careers will have a high-stress pathway (i.e. trial attorney) but also less demanding types of work within the profession.  Other careers require a high degree of physical stamina and skill.  These may not be the jobs you would think of right away as physically demanding.  For example, preschool teachers and hairdressers are on their feet most of the day, every day!
  3. Career planning and completing required training while living with a chronic and possibly progressive condition may require outside support.  Teens that have been able to perform in high school without any compensations such as 504 plans may need more help in college.  Higher education often expects more independence and more mobility (think large campuses and internships) from students.  Most universities have an office for disabled students. Their staff will work with students with disabilities to create a plan, but it is the student’s responsibility to inform the office of specific needs and to develop strategies with the staff and faculty.  If your teen doesn’t want to be “identified” as disabled, this is the time to talk about being proactive and positive.  Finding assistance and receiving effective support could make all the difference.
  4. Explore local and online support groups.   Adults with your teen’s medical issues may have useful strategies or tales of caution that will help you develop a plan or expose problems that you haven’t anticipated.  Remember that personal stories are just that: personal.  Experiences are quite variable and it is difficult or impossible to  predict another person’s path.

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The Cube Chair: Your Special Needs Toddler’s New Favorite Seat!

 

 

Finding a good chair for your special needs toddler isn’t easy.  Those cute table-and-chair sets from IKEA and Pottery Barn are made for older kids.  Sometimes much older, like the size of kids in kindergarten.  Even a larger child with motor or sensory issues will often fall right off those standard chairs!

Should you use a low bench?  I am a big fan of the Baby Bjorn footstool for bench sitting in therapy, but without a back, many toddlers don’t last very long without an adult to sit with them.  Independent sitting and playing is important to develop motor and cognitive skills.   The cute little toddler armchairs that you can get with their name embroidered on the backrest look great, but kids with sensory or motor issues end up in all sorts of awkward positions in them.  Those chairs aren’t a good choice for any hypermobile child or children with spasticity.

Enter the cube chair.  It has so many great features, I thought I would list them for you:

  • Made of plastic, it is relatively lightweight and easy to clean.  While not non-slip, there is a slight texture on the surface that helps objects grip a little.  Add some dycem or another non-slip surface, and you are all set.
  • Cube chairs can be a safe choice for “clumsy” kids. Kids fall. It happens to all of them.  The design makes it very stable, so it is harder to tip over. The rounded edges are safer than the sharp wooden corners on standard activity tables.
  • It isn’t very expensive.  Easily found on special needs sites, it is affordable and durable.
  • A cube chair is also a TABLE! That’s right; turn it over, and it is a square table that doesn’t tip over easily when your toddler leans on it.
  • Get two:  now you have a chair and table set!  Or use them as a larger table or a surface for your child to cruise around to practice walking.  That texture will help them maintain their grip.  The chairs can stack for storage, but you really will be using them all the time.
  • It has two seat heights.  When your child is younger, use the lower seat with a higher back and sides for support and safety.   When your child gets taller, use the other side for a slightly higher seat with less back support.
  • The cube chair is quite stable for kids that need to hold onto armrests to get in and out of a chair.  The truly therapeutic chairs, such as the Rifton line, are the ultimate in stability, but they are very expensive, very heavy, and made of solid wood.

Who doesn’t do well with these chairs?  Children who use cube chairs have to be able to sit without assistance and actively use their hip and thigh muscles to stabilize their feet on the floor.  Kids with such significant trunk instability that they need a pelvic “seatbelt” and/or lateral supports won’t do well with this chair.  A cube chair isn’t going to give them enough postural support. If you aren’t sure if your child has these skills, ask your occupational or physical therapist.  They could save you money and time by giving you more specific seating recommendations for your child.

Your child may be too small or too large for a cube chair.  Kids who were born prematurely often remain smaller and shorter for the first years, and a child needs to be at least 28-30 inches tall (71-76 cm) to sit well in a cube chair without padding.

You may add a firm foam wedge to activate trunk muscles if they can use one and still maintain their posture in this chair, or use the Stokke-style chair A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair or the Rifton chair until your child has developed enough control to take advantage of a cube chair.

Looking for more information on positioning and play?  Check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and How To Pick The Best Potty Seat For Toilet Training A Child With Low Tone.  I am in the process of writing a series of practical guides for parents of children with hypermobility, so keep checking back on my site for the launch this summer!!

The Hypermobile Hand: More Than A Strength Problem

 

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I just received another referral for a kid with “weak’ hands.  Can’t hold a pencil correctly, can’t make a dark enough mark on paper when he writes or colors.  But his mom says he has quite a grip on an object when he doesn’t want to hand something over.  He plays soccer without problems and otherwise functions well in a regular classroom.  Could it be that hypermobility is his underlying problem?

Some children display problems with fine motor skills due to low muscle tone.  Many times, their low tone is significant enough to create poor joint alignment and stability, resulting in joint hypermobility as well as low muscle tone.  But kids can also have joint laxity with typical muscle tone.  Assessing the difference between tone, strength, alignment/stability and endurance is why you get an evaluation from a skilled therapist.  And even then, it can be tricky to determine etiology with the youngest children because they cannot follow your directions or answer questions.  Time to take out your detective hat and drill down into patient history and do a very complete assessment.

With older kids, both low tone and joint laxity can lead them over time to develop joint deformity and soft tissue damage.  Like a tire that you never rotated on your car, inappropriate wear and tear can create joint, ligament, tendon, and muscular imbalance problems that result in even worse alignment, less stability and endurance, and even pain.  And yes, weakness is often observed or reported, but it often is dependent on posture and task demands, rather than being consistent or specific to a nerve distribution or muscle/muscle group.

What does the classic hypermobile hand look like?  Here are some common presentations:

  • The small joints of the fingers and thumb look “swaybacked”, as the joint capsule is unstable and the tendons of the hand exert their pull without correct ligament support.  When they slide laterally and the joint is unable to move smoothly, people say that their fingers “lock” or they are diagnosed with “trigger finger”.
  • The arches of the hand aren’t supported, so the palm looks flat at rest.  By late preschool, the arches of the hand should be evident in both active and passive states.
  • The fleshy bases of the thumb and pinky ( the thenar and hypothenar eminences, for all you therapists out there) aren’t pronounced, due to the lack of support reducing normal muscle development during daily use.
  • Grasp and pinch patterns are immature and/or atypical.  A preschooler uses a fisted grasp to scribble, a grade-school child uses two hands to hold an object that should be held by one hand and uses a “hook” grasp on a pencil.
  • Grasp and pinch may start out looking great, and deteriorate with the need for force.  Or prehension begins looking poor and improves for a while, until fatigue sets in.  This bell-curve pattern of grasp control is often seen with kids that have poor proprioceptive discrimination.  As they use their hands they receive more input, but as fatigue sets in, they cannot maintain a mature grasp and good control.
  • The typical arches of the hand that create the “cupping” of the palm when pretending to scoop water from a stream, for example, will be somewhat flattened. Unless there is nerve damage, you won’t see the “claw hand” pattern or another atypical posture.
  • Fine grasp will often be accomplished with the thumb and third finger to achieve greater stability through the MCP (knuckle) joints and to avoid full opposition of the thumb.  Another common compensatory pattern is using digits II and III together to gain greater stability.  Some kids can even wrap one digit partially around another to do this.  Now that’s hypermobility!

Don’t forget that hypermobility creates poor sensory processing feedback loops.  Reduced proprioception and kinesthesia will result in issues when children try to grade force and control movement without compensations such as visual attention and decreased speed. This can result in kids being labeled clumsy or careless.

Looking for ideas to address the difficulties children face when they have hypermobility in their hands? Take a look at For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance and Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility?.  Depending on the age and skill level of the child, adaptations and education can be just as important as therapeutic exercise.  Your pediatric occupational therapist can help with more than pencil grasp; we are able to help with so many real-life issues!

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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!  I am awaiting a shipment of Kineseotex’ Light Touch tape, which has an ultra-gentle adhesive.  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 Issues and Low Tone, 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!