Tag Archives: Connective tissue disorders

Have a Child With Low Tone or a Hypermobile Baby? Pay More Attention to How You Pick Your Little One Up

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Carrying and holding kids is such a natural thing to do.  But when your child has hypermobility due to low muscle tone, joint issues or a connective tissue disorder, how you accomplish these simple tasks makes a difference.  Your actions can do more than get them from one position or location to another: they can build a child’s skills, or they can increase the risk of damage by creating excessive flexibility or even accidentally injure a child’s joints.

How could something so simple be both a problem as well as an opportunity?  Because hypermobility creates two issues that have to be addressed:  Less strength and stability at vulnerable joints, and less sensory feedback regarding pain and position sense in your child.  The ligaments, tendons, muscles and joint capsule at every hypermobile joint are more likely to be damaged when excessive force is placed on them.

Knowing how much force is too much isn’t easy without some instruction from a skilled therapist.  Depending on your child to react quickly and accurately to accidental stretch or pressure by crying or pulling away isn’t a good idea.  Their excessive flexibility reduces firing of receptors deep within all of these tissues in response to excessive force.  You may have looked at your child’s shoulders or ankles and think “That looks uncomfortable.  Why isn’t she fussing?”  This is the reason.  It means that you will have to be altering your actions to reduce the risk of harm.

As I mentioned earlier, this is also an opportunity.  It is an opportunity to teach your child about safe movement and positioning, right from the start.  Even the youngest child will pick up on your emphasis on alignment, control and safety.  They are always listening and learning from you every day, so incorporate effective movement into your handling and help your child build awareness and independence today!

Here are some strategies for you and your child:

  1. Always spread the force of your grasp over their body, and place your hands on the most stable locations, not the most flexible.  Lift a child through their trunk, not by holding their arms.  If they cannot steady their head, support it while you lift.  If you feel those little bones in their wrists and ankles moving under your grasp, support those joints instead of pulling on them.  Not sure how to do this correctly?  Ask your therapist for some instruction.
  2. Do not depend on a child’s comfort level to tell you how far a joint should stretch.   Think about typical joint movement instead.   If their hips spread very wide when you place them on your hip, think about holding them facing forward, with their knees in line with their hips, not pressed together.
  3. Give them time to move with you.  Those over-stretched muscles are at a mechanical disadvantage for contraction.  This means that when you tell a child to sit up, you have to give them time to do so before you scoop them up.  They aren’t  being defiant or lazy (I have not, in fact, ever met a lazy baby!).  This is a neuromuscular issue.
  4. Discourage unsafe movements.  Some children find that overstretching their joints gives them more sensory feedback.  It feels good to them.  This is not OK.  You will not be able to stop them every time, but they will eventually learn that their is a right way and a wrong way to move.  Knowing why isn’t necessary.  Yet.  Teach them to respect joint movement and use things like graded joint compression and vibration (your occupational therapist should be able to help you with this) to give them the sensory feedback they want.

Still concerned about safety?  Read Teaching Safety Awareness To Special Needs Toddlers to learn more methods to build independence without injury.

 

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How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children

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Loose joints affect emotions and behavior too!

As rehabilitation therapists, OTs and PTs are focused on skill building and reaching functional goals with our clients.  But feelings influence behavior, and so therapists have to be aware of more than joints and muscles when looking at function.  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 profile from 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  to a clinician unless that therapist is aware of a child’s history or all of the current clinical problems.  If a younger child is struggling with being active, check out Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility for some ideas to make things easier.  For older kids that struggle with sports, read Should Your Hypermobile Child Play Sports? because sometimes the question is how to play, not whether to play.
  3. Kids with hypermobility can have problems with falling and staying asleep, which affects daytime alertness and energy.  It is well-documented that a lack of good-quality sleep results in childhood behavioral changes for typical kids.  Pain, lack of daytime activity levels high enough to trigger sleep, bladder control issues leading to nighttime awakening or bedwetting…the list of sleep issues for kids with hypermobility can be really 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.  Crankiness is only the beginning.  Imagine being constantly constipated or gagging/choking on food.  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.  The development of persistent oppositional behavior can begin at the dinner table and spill over into all interactions.  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.  The extra weight they carry makes movement more difficult and places extra force on joints.  But exercising in pain and fatigue isn’t an easy fix.
  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!

 

Are you a parent of a child with hypermobility?  Check out For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps. and Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues for some insights into positive ways to address the future.

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? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets  and Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?.

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Prevent Skin Injuries In Kids With Connective Tissue Disorders: Simple Moves To Make Today

Children with EDS and other connective tissue disorders such as joint hyper mobility disorder often have sensitive skin.  Knowing the best ways to care for their skin can prevent a lot of discomfort and even injury.  These kids often develop scars more easily, and injured skin is more vulnerable in general to another injury down the road.  As an OT and massage therapist, I am always mindful of skin issues, but I don’t see a lot of helpful suggestions for parents online, or even useful comments from physicians.  I want to change that today.

  1. Use lotions and sunscreens.  They act as barriers to skin irritation, as long as the ingredients are well-tolerated.  Thicker creams and ointments stay on longer.  Reapplication is key.  It is not “one-and-done” for children with connective tissue disorders.  Some children need more natural ingredients, but you  may find sensitivities to plant-based ingredients too.  Natural substances can be irritants as well.  After all, some plants secrete substances to deter being eaten or attacked!
  2. Preventing scrapes and bruises is always a good idea, but kids will be kids.  Expect that your child will fall and scrape a knee or an elbow.  Have a plan and a tool kit.  I have found that arnica cream works for bruises and bumps, even though it’s effectiveness hasn’t been scientifically proven to everyone.  Bandages should not be wrapped fully around fingers, and a larger bandage that has some stretch will spread the force of the adhesive over a larger area, reducing the pressure.  DO NOT stretch their skin while putting on a bandage.  And remove bandages carefully.  You may even want to use lotion or oil to loosen the adhesive, then wash the area gently to remove any slippery mess.
  3. If your child reacts to an ingredient in a new cream or lotion but you aren’t sure which one, don’t toss the bottle right away.  You may find that your child reacts to the next lotion in the same manner, and you need to compare ingredient lists to help identify the problem.
  4. Hydrate, hydrate, hydrate.  Skin needs water to be healthy, and even more water to heal.  Buy a fun sport bottle, healthy drinks that your child likes, and offer them frequently.
  5. Clothing choice matters.  Think about the effect of tight belts, waistbands, even wristbands on skin. Anything that pulls on skin should be thought out carefully.  This includes shoe straps and buckles.   Scratchy clothing isn’t comfortable, but it can be directly irritating on skin.  That irritation plus pulling on the skin (shearing) sets a child up for injury.
  6. Teach gentle bathing and drying habits.  Patting, not rubbing the skin, and the use of baby washcloths can create less irritation on skin.  Good-bye to loofahs and exfoliation lotions, even if they look like fun. Older girls like to explore and experiment, but these aren’t great choices for them.  Children that know how to care for their skin issues will grow up being confident, not fearful.  Give your child that gift today!

Looking for more information on caring for your child with connective tissue disorders? Check out Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health and Teach Kids With EDS and Low Tone: Don’t Hold It In!

Does your child have toileting issues related to hypermobility?  Read about my book that can help you make progress todayThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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 also 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.  Kids who start out able to speak intelligibly can fatigue by the end of a sentence.  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. 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.  A PROMPT-certified therapist may be especially helpful, as this specialized speech therapy treatment approach uses tactile and proprioceptive cues to learn the oral control needed for speech.  Your PT or OT can help address the breath control strategies, but learning to use them in speech often requires coordinating this with the training of a speech language pathologist.  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 ,  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?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!

I give you both a readiness checklist and practical ways to develop readiness instead of waiting for it.  Without forcing, begging, or criticizing your child!  Learn all the things you can do right now to make your child more successful and reduce your own stress and anxiety about potty training.  Read more about my book here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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