Tag Archives: Ehlers Danlos Syndrome

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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Can Hypermobility Cause Speech Problems?

 

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As a pediatric OT, many of my clients have speech and feeding problems that are attributed to low muscle tone.  Very often, that is where assessment ends.  Perhaps it shouldn’t.  Joint hypermobility can create issues such as dysarthria, disfluency and poor voice control.  It isn’t only about muscles and muscle coordination.  Being able to identify all the causes of speech delays and difficulties means better treatment and better results.

I have had the privilege to know a handful of master speech pathologists whose manual evaluation skills are amazing.  These clinicians are capable of identifying joint laxity and poor tissue integrity (which contribute to injury, weakness and instability) as well as identifying low muscle tone, sensory processing issues and dyspraxia.  They can assess whole-body stability and control instead of ending their assessment at the neck.

It is more difficult to clearly differentiate low muscle tone from hypermobile joints in young children.  Assessing the youngest clients that cannot be interviewed and do not follow instructions carefully (or at all!)  is a challenge.  Many times we are forced to rely on observation and history as much as we use responses from direct interaction with a child.  In truth, laxity and low tone often co-exist.  Lax joints create overstretched or poorly aligned muscles that don’t contract effectively.  Low muscle tone doesn’t support joints effectively to achieve and maintain stability, creating a risk for overstretching ligaments and injuring both tendons and joint capsules.  A vicious cycle ensues, creating more weakness, instability and more difficulties with motor control.

Some children that are diagnosed with flaccid dysarthria, poor suck/swallow/breathe synchrony, phonological issues and poor respiratory control may be diagnosed later in life (sometimes decades later) as having Ehlers-Danlos Syndrome or generalized benign joint hypermobility syndrome.   They often drop the final sounds in a word, or their voice fades away at the end of a sentence when they are younger. These kids might avoid reading or speaking front of the class when older.  This isn’t social anxiety or an attitude problem.  They are struggling to achieve and maintain the carefully graded control needed for these speech skills.

You may notice a breathy-ness to their voice that makes them sound more like their grandparents than their peers.  Children that avoid running in sports like soccer or hockey aren’t always unable to continue because they are globally fatigued or in pain.    Being unable to stabilize their trunk results in inefficient muscular recruitment and limited grading of breath.  Ask any runner or singer and they will tell you what that means: game over.

If your child is struggling with these issues and isn’t receiving speech therapy, now may be the time to explore it.  You and your child may be relieved to learn that there is effective therapy out there!

Looking for more information on hypermobility?   Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior ,  How Hypermobility Affects Self-Image, Behavior and Regulation in Children and Should Your Hypermobile Child Play Sports? for more strategies to improve daily life!

Is your child struggling with toilet training?  I wrote an e-book for you!  The Practical Guide to Toilet Training Your Child With Low Tone is available on Amazon and Your Therapy Source.  I looked far and wide for resources to help the families I work with as an OT.  There wasn’t anything out there that explained why kids and parents find this skill so hard to achieve, so I had to do something to help the situation!  Read more about my book here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

 

Hypermobile Toddlers: It’s What Not To Do That Matters Most

 

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Do you pick up your toddler and feel that shoulder or those wrist bones moving a lot under your touch?  Does your child do a “downward dog” and her elbows look like they are bending backward?  Does it seem that his ankles are rolling over toward the floor when he stands up?  That is hypermobility, or excessive joint movement.

Barring direct injury to a joint, ligament laxity and/or low muscle tone are the usual culprits that create hypermobility.  This can be noticed in one joint, a few, or in many joints throughout the body.  While some excessive flexibility is quite normal for kids, other children are very, very flexible.  This isn’t usually painful for the youngest children, and may never create pain for your child at any point in their lifetime.  That doesn’t mean that you should ignore it.  Hypermobility rarely goes away, even though it often decreases a bit with age in some children.  It can be managed effectively with good OT and PT treatment.   And what you avoid doing at this early stage can prevent accidental joint injury and teach good habits that last a lifetime.

  1. Avoid over-stretching joints, and I mean all of them.  This means that you pick a child up with your hands on their ribcage and under their hips, not by their arms or wrists.  Instruct your babysitter and your daycare providers, demonstrating clearly to illustrate the moves you’d prefer them to use. Don’t just tell them over the phone or in a text.  Your child’s perception of pain is not always accurate when joint sensory aren’t stimulated (how many times have they smacked into something hard and not cried at all?) so you will always want to use a lift that produces the least amount of force on the most vulnerable joints.  Yes, ribs can be dislocated too, but not nearly as easily as shoulders, elbows or wrists.  For all but the most vulnerable children, simply changing to this lift instead of pulling on a limb is a safe bet.
  2. Actively discourage sitting, lying or leaning on joints that bend backward.  This includes “W” sitting.   I have lost count of the number of toddlers I see who lean on the BACK  of their hands in sitting or lying on their stomach.  This is too much stretch for those ligaments.  Don’t sit idly by.  Teach them how to position their joints.  If they ask why, explaining that it will cause a “booboo” inside their wrist or arm should be enough.  If they persist, think of another position all together.  Sitting on a little bench instead of the floor, perhaps?
  3. Monitor and respect fatigue.  Once the muscles surrounding a loose joint have fatigued and don’t support it, that joint is more vulnerable to injury.  Ask your child to change her position or her activity before she is completely exhausted.  This doesn’t necessarily mean stopping the fun, just altering it.  But sometimes it does mean a full-on break.  If she balks, sweeten the deal and offer something desirable while you explain that her knees or her wrists need to take a rest.  They are tired.  They may not want to rest either, but it is their rest time.  Toddlers can relate.

Although we as therapists will be big players in your child’s development, parents are and always will be the single greatest force in shaping a child’s behavior and outlook.  It is possible to raise a hypermobile child that is active, happy, and aware of their body in a nonjudgmental way.    It starts with parents understanding these simple concepts and acting on them in daily activities.

Wondering about your child’s speech and feeding development?  Take a look at Can Hypermobility Cause Speech Problems? to learn more about the effects of hypermobility on communication and oral motor skills.

Looking for information on toilet training your child with Ehlers Danlos syndrome, generalized ligament laxity, or low muscle tone?  My e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, gives you detailed strategies for success, not philosophy or blanket statements.  I include readiness checklists, discuss issues that derail training such as constipation, and explain the sensory, motor, and social/emotional components of training children that struggle to gain the awareness and stability needed to get the job done.  You will start making progress right away!

My book is available on my website tranquil babies, at Amazon, and at yourtherapysource.com.

Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility?

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An adaptive grasp pattern for the hypermobile child

As a pediatric OT, I am often asked to assess and teach proper pencil grasp.  Once you start looking, you see a lot of interesting patterns out there.  When a child clearly has low muscle tone and/or hypermobile joints, the question of what to do about an atypical pencil grasp used to puzzle me.  I could spend weeks, or even months, teaching positioning and developing hand strength in a child, only to find that they simply couldn’t alter their grasp while writing.

Now I triage grasp issues by determining if it is a problem for the child now or in the future.  An atypical pencil grasp can be an acceptable functional compensation or it can be a contributor to later joint damage.  What’s the difference?  You have to know a bit about hand anatomy and function, how to adapt activities, and how to assess the ergonomics of writing.

Children aren’t aware of most of the problems that low tone and/or hypermobility create when they hold a pencil.  They just want to create. The effects of their unique physiology often results in grasp patterns that cause parents pain just to observe; fingers twisted around the shaft of the pencil, thumb joints bent backward, etc.  The kids aren’t usually complaining; their lack of sensory receptor firing at the joints and muscles gives them no clues to the strain they are inducing.  None.  Occasionally children will complain of muscular fatigue or pain after writing a few paragraphs or completing an art project.  For the most part, they are unconcerned and unaware of what is really going on.  For a more detailed explanation, please check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children,

Do these funny grasp patterns reduce legibility?  Only sometimes.  There are atypical grasp patterns that are good choices for children with hypermobility.  One is to place the shaft of the pencil directly between the index and third finger, and allow the thumb to support the side of the pencil.  The knuckle joints of those fingers provide more stability than the standard tripod grasp.  This grasp pattern is illustrated at the beginning of this post.

I allow preschoolers who need to keep more than 3 fingers on the shaft of the pencil to do so, and wait to see what happens as they develop more overall hand control.  This is especially beneficial for the child with sensory discrimination issues or joint hypermobility.  Forcing a tripod grip isn’t always in their best interest now or for the future.

What can be done?  My favorite method to help children with low tone or hypermobility is to look at the problem with both a wide-angle lens and with targeted analysis.  I think about changing overall posture, altering any and all equipment, and examine the mechanics of movement.

These kids often need better proximal support, meaning that changing their chairs and writing/drawing surfaces could result in less strain in their hands and wrists.  To understand one way your whole body is involved in writing, take a look at Better Posture and More Legible Writing With A “Helper Hand” Using writing tools that reduce joint force by enlarging the shaft diameter or changing out lead for gel pens or markers is another strategy.  Take a look at Strengthening A Child’s Pencil Grasp: Three Easy Methods That Work  and Problems With Handwriting? You Need The Best Eraser for more good ideas that actually make a difference.  I will teach kids how to pace themselves to reduce force and fatigue throughout their bodies.  A little awareness can be a big help.  Finally, I may suggest a pencil grip, but I assess this carefully in order to avoid forcing a typical grasp on a child that can’t manage it due to instability or profound weakness.  I might start with the Grotto Grip The Pencil Grip That Strengthens Your Child’s Fingers As They Write., in hopes that we can strengthen and train a stable grip, but I will move on quickly if it doesn’t work within a month or causes more difficulty/pain in writing.

Wondering if there are issues beyond writing that your OT can address?  Check out Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and Teach Kids With EDS and Low Tone: Don’t Hold It In! for more information.

Atypical pencil grasp can be a problem, but it can also be a solution to a child who is struggling to write and draw in school.  If you have concerns, ask your OT to evaluate and explore the issue this week!

 

Hypermobility in Young Children: When Flexibility Isn’t Functional

Your grandma would have called it being ” double jointed”.   Your mom might mention that she was the most flexible person in every yoga class she attended.  But when extra joint motion reduces your child’s performance or creates pain, parents get concerned.  Sometimes pediatricians and orthopedists do not.

Why would that happen?  A measure of flexibility is considered medically within the norm for children and teens.  Doctors often have no experience with rehab professionals, so they can’t share other resources with parents.  This can mask some significant issues with mild to moderate hypermobility in children.  Parents leave the doctor’s office without a diagnosis or advice, even in the face of their child’s discomfort or their struggles with handwriting or recurrent sports injuries.  Who takes hypermobility seriously?  Your child’s OT and PT.

Therapists are the specialists who analyze functional performance and create effective strategies to improve stability and independence.  I will give a shout-out to orthotists, physiatrists and osteopaths for solutions such as splints and prolotherapy.  Their role is essential but limited, especially with younger children. Nobody is going to issue a hand splint or inject the ligaments of a child under 5 unless a child’s condition is becoming very poor very quickly.  Adaptations, movement education and physical treatments are better tolerated and result in more functional gains for most middle and moderately involved hypermobile children.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand more about what an OT can do to help your child.

Low tech doesn’t mean low quality or low results.  I have done short consults with children that involve only adaptations to sitting and pencil choice for handwriting, with a little ergonomic advice and education of healthy pacing of tasks thrown in.  All together, we manage to extend the amount of time a child can write without pain.  Going full-tilt paperless is possible when pain is extreme, but it involves getting the teachers and the district involved.  Not only is that time-consuming and difficult to coordinate, it is overkill for those mildly involved kids who don’t want to stand out.  Almost nothing is worse in middle school than appearing “different”.  A good OT and a good PT can help a child prevent future problems, make current ones evaporate, or minimize a child’s dependence and pain.

Hypermobile kids are often bright and resourceful, and once they learn basic principles of ergonomics and joint protection, the older children can solve some of their own problems.  For every child that is determined to force their body to comply with their will to compete without adaptation, I meet many kids that understand that well-planned movements are smarter and give them less pain with more capability.  But they have to have the knowledge in order to use it.  Therapists give them that power.

Parents:  please feel free to comment and share all your great solutions for your child with hypermobility, so that we all can learn from YOU!

Is your hypermobile child also struggling with toilet training or incontinence?  Check out Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty  to gain an understanding of how motor and sensory issues contribute to this problem, and how you can help your child today!