Tag Archives: hypotonia

Hypermobile Kids, Sleep, And The Hidden Problem With Blankets

 

annie-spratt-467871

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 for hypermobile kids are sensory-based, some are related to activity during the day, and some are orthopedic.  Here is a list of 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.  Being still is a bit similar to being in a sensory deprivation tank, and it’s not always calming.  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 in the middle of the night.  Pain also makes kids more restless sleepers.  Restless sleepers thrash around a bit under the covers, becoming trapped in multiple layers of bed linens, or they can fall asleep in awkward positions that result in pain.
  • Children that are sedentary during the day for any reason (preference for tablet or video play, fatigue, pain, etc) may not be physically tired enough at night.  They may also be staying up too late at night.  Good sleep hygiene includes enough daytime activity combined with a conscious wind-down hours before bedtime occurs.
  • Some children with generalized low tone or joint hypermobility (especially with a connective tissue disorder) have issues with the partial collapse of their airway during sleep.  They snore or gasp in their sleep, and appear exhausted even after a full night’s sleep.  This is a serious issue.  Sleep apnea should be evaluated and addressed by a professional.
  • 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 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 by waking us slightly.  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.
  • Waking up to go to the bathroom or having to clean up a nighttime accident ruins sleep.  It isn’t uncommon to have older kids wear protective garments well past 5 at night, and some children need to practice holding in their urine to expand the bladder’s ability to hold it all night long.  This is something to discuss with your child’s urologist or pediatrician, since “holding it in” can be it’s own problem.  Read Teach Kids With EDS Or Low Tone: Don’t Hold It In! to learn more about the pitfalls of too much “holding”.

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.
  • Address sleep apnea, lack of daytime activity, and toilet training/scheduling rather than waiting for things to improve.  Not all young children achieve night time dryness on pace with other children, but ignoring the impact isn’t going to help things.
  • Carefully consider the issues before you try a weighted blanket.  Originally sold for kids on the autistic spectrum and for kids with sensory processing disorders without muscular or orthopedic issues, these blankets have become popular with other groups.  The biggest concern for hypermobile kids is that placing weight (meaning force) on an unstable joint over time without conscious awareness or adult monitoring is a safety issue.  It is possible to create ligament injury or even subluxation of a joint with weights, depending on limb position, length of time weight is applied, and the amount of force placed on a joint.  Talk the idea of a weighted blanket 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.  consider techniques like gentle joint compression and/or deep pressure brushing, but ask your therapists how to adapt it for your child’s specific  needs  Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?.  For kids who sleep well but wake up stiff, learn how to use gentle massage and possibly heat to help them get going.  do not ignore pain at bedtime, or complaints of pain on awakening.  These are important clues that you need to address.   Ask your occupational therapist or your pediatrician for ideas to adapt your bedtime routine (OT)  or your pain plan (MD) to handle nighttime pain.
  • 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 ( when 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.

Looking for more information about managing hypermobility in children?  Take a look at Should Your Hypermobile Child Play Sports? and Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.

 

Looking for more personal assistance in addressing bedtime issues?  Visit my website and purchase a consultation session to ask questions, get resources, and even make a sleep plan that works!

sean-wells-471209

Advertisements

Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children

rockybeach.jpeg

When most parents think of sensory processing issues, they think of the children who hate clothing tags and gag on textured foods.   Joint hypermobility, regardless of the reason (prematurity, Ehlers-Danlos syndrome, head injury, etc) can result in kids who stumble when they move and wobble when they rest.  They are seen by orthopedists and physical therapists, and told to build up those weak muscles.  Well, those kids have sensory processing issues too!   And they deserve more effective treatment than they typically receive.

Lack of joint integrity, especially decreased joint stability, results in a decrease in proprioception and kinesthesia.  These two under-appreciated senses tell a child about her body’s positions and movements without the use of vision. The literature out there is sparse. If you are hoping that a lot of research on this topic exists, and that your pediatrician understands why your child can’t grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.

Most of the hard research has been done by PTs on proprioception in the leg, and there isn’t a lot of research done to begin with.  Essentially no research has been done on hand function or practical applications of research to living skills of any kind when it comes to hyper mobility syndromes and proprioception. But OTs can teach you, your child and your child’s classroom staff about the connections between sensory processing and motor performance.  They can help your child improve skills based on their knowledge of neurology and function.

Here is a simple explanation of how proprioception and kinesthesia affect function.  Consider the process for touch-typing.  Your awareness of your hand’s position while at rest on the home row is proprioception.  You know where your movement starting and end points are via proprioception without looking.  Your awareness of the degree of movement in a joint while you are actively typing is kinesthesia.  Kinesthesia tells you that you just typed a “w” instead of an “e” without having to look at the screen or at your fingers.Your brain “knows”, through learned feedback loops, that your finger movement was too far to the left to type the letter “w”, but far enough to have been a “e”.  Teachers and others call this “muscle memory”, but that is a misnomer.  Muscles have no memory; brains do.  And brains that aren’t getting the right information send out the wrong instructions to muscles.  Oops!

You are able to grade the amount of force on each key because your skin, joint and muscle sensors transmit information about the resistance you meet while pressing down each key.   Your brain compares it previous typing success and the results on the screen, and makes adjustments in fractions of a second. This is sensory processing at work.

Why do children with hypermobility have proprioceptive and kinesthetic processing problems?  Because information from your body is transmitted is through receptors embedded in the tissue within and surrounding the joints.   These receptors respond to muscle and tendon stretch, muscle contraction, and pressure within the joint.   Joint hypermobility creates less stimulation (and thus less accurate information) to these sensory receptors.  The information coming into the brain is either insufficient or delayed (or both), and therefore the brain’s output of directions to achieve postural stability or dynamic movement is correspondingly poor.

This shows up as a collapsed posture, difficulty quickly changing positions to catch a ball or leap over an obstacle, a heavy-footed gait, and a whole lot of other difficulties.  Has your child been described as fidgety or distracted?  Read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.  Hypermobility can even make speech and feeding more challenging.  Read Can Hypermobility Cause Speech Problems? to learn more about the signs that your child may benefit from speech therapy as well as OT and PT.  Does your child struggle with pencil grasp?  An atypical grasp can be helpful, but you need to know which patterns are harmful and which support performance.  Please read Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? , and  For Kids With Sensory Issues and Low Tone, Add Resistance Instead of Hand-Over-Hand Assistance for more information that you can share with your child and teachers as well.

Because many hypermobile children are able to accomplish the basic developmental milestones within a reasonable time period, pediatricians don’t pick up on mild hypermobility until kindergarten.  This is when sitting at a table for longer periods becomes the expected norm, and holding a pencil in a mature way is required.  To learn more about why your child’s grasp is an issue, take a look at The Hypermobile Hand: More Than A Strength Problem.

Can children with hypermobility improve their sensory processing and thereby improve the quality of their movements in daily life?  Absolutely.  Because sensory processing is a complex skill, addressing each component of functional performance will give the hypermobile child more skills.  Building muscular strength within a safe range of joint movement is only one aspect of treatment.  If your child is experiencing difficulty in gym or playing sports, please read Should Your Hypermobile Child Play Sports? for some useful ways to think about what you say to your child.  Positioning a child to give them more sensory feedback while in action is essential.  Increasing overall sensory processing by using other sensory input modalities is often ignored but very helpful.  To learn more about how to help your child handle hypermobility, check out Hypermobile Kids, Sleep, And The Hidden Problem With Blankets.

I’ll bet that you didn’t think of toileting as a proprioceptive issue.  When thinking about toileting,  the biggest problem is  often an interoceptive issue; the kind of proprioception that involves internal organs.  This can make it difficult for hypermobile kids to feel when they need to “go” in time to get to the bathroom, but it can also create retention.  The urge isn’t very powerful for them.

I believe that vestibular input is one of the most powerful but rarely used modalities that can improve the sensory-motor performance of hypermobile children.  They don’t have to demonstrate vestibular processing deficits to benefit from a vestibular program.  The lack of effective sensory processing due to poor proprioceptive registration and discrimination creates problems with balance, and targeted vestibular input is designed to fine-tune the brain’s balance center.  I could link you to scholarly articles on this concept, but you would fall asleep before finishing them.  Trust me, vestibular input can make a difference.  This program can be done without stressing fragile joints, which is often a limitation for the programs that focus too much on muscular strengthening and stabilization activities.

My favorite sensory processing strategy for hypermobile kids?  The use of rhythmic music during movement.  Therapeutic music programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children.  Using sound to improve vestibular processing increases the quality and the speed of response to a loss of balance.  Muscle tone increases in children while they are listening through stimulation of  midbrain centers, and this combo of improved tone and improved vestibular processing helps children improve their safety while moving and even while sitting still. For all of you with kids who fall off chairs while doing nothing, you know what I mean!  I have been trained in the use of Therapeutic Listening through Vital Sounds, but there are other programs that work well too.  The most significant benefit is that there is no stress on connective tissue, even for kids that are in a lot of pain and have very limited mobility.  For kids that have POTS as well as hypermobility, this can be a real advantage.  Treatment of the vestibular system can improve the ability of the autonomic nervous system.

Another technique to enhance sensory processing is the Wilbarger Protocol.  Although not created for children with hypermobility, I believe that it can be altered to address poor proprioceptive discrimination in specific conditions such as EDS.  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for a look at how I adapt the protocol with safety in mind.

Kineseotape can be helpful to provide some of the missing proprioceptive information.  When your child has a connective tissue disorder, or is under the age of 3, skin issues complicate taping.  Read Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders? for some suggestions to make this treatment more effective and less risky.

It is difficult to explain to insurers and sometimes even neurologists ( don’t get me started on how hard it is for orthopedists to follow this),  but if you understand the complex processes that support sensory processing, you will be changing the background music in your clinic or your home in order to capitalize on this effect!  I recommend the Vital Links Therapeutic Listening programs for their ease of use and child-friendly music.

Children with hypermobility can benefit from occupational therapy sessions that provide more than a pencil grip and a seat cushion.  All it takes is an appreciation for the sensory effects of hypermobility on function.

Does your hypermobile child also have toileting issues?  My e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, could help you make progress today!  Many children with hypermobility also have low tone, and the theories and strategies that support stability and sensory processing are totally applicable for hypermobile kids!  This book has readiness checklists and strategies that parents can use to make real improvements in skills, not platitudes like ” read your child’s signals” and “don’t push your child to train”.  You will learn about the sensory, motor, and social/emotional issues that contribute to toileting delays, how to select the right equipment, clothing, and more!

The Practical Guide is available on my website, tranquil babies and on Amazon as well as at your therapy source, a great place for therapists and parents to find exercise programs and activities for children.  Read more about it, and hear what parents have to say about this unique e-book:The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

janko-ferlic-153521