Category Archives: low tone

Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome?

guillaume-de-germain-329206

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 also makes long-term alterations in the brain’s ability to use sensory input for movement and state control.  It 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  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 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.

chris-lawton-484907

Advertisements

Potty Training Boys: Do You Teach Standing Up Or Sitting Down?

 

darran-shen-477150.jpgTraining children for bladder control before bowel control is often easier for quite a few reasons:  More frequent bathroom trips = more opportunities for success, digestion and diet issues don’t stall success,  and urination is usually a painless, phobia-free, and quick experience.  In general, families that hire me as a consultant are encouraged to consider bladder training to be the first mountain to conquer.

But should little boys sit or stand to do the deal?  After a child has been sitting on the potty, understands it’s use, and has consistent success, I will encourage parents to have their sons stand to urinate.  But it isn’t as simple as that.  There are pros and cons.

First, the pros of standing to urinate:

  • little boys have probably seen their brothers, cousins and dad use the toilet, and most children want to copy their same-gender parent.  This is often more motivation to become independent in the bathroom.
  • young children may be a little more mindful of why they are standing in front of the toilet.  Children that are sitting have a harder time seeing what is happening and can get distracted. I know, I know, even the “big boys” can have terrible aim.  But children need all the help they can get to stay focused.
  • improving aim is motivation to use the toilet.  I wrote a blog post on using targets to teach boys to improve their accuracy and build interest in toileting.Piddlers Make Potty Training Fun!  These really work!

And now the cons:

  • See the item about distractibility under “pros”.  Some boys are so distracted that sitting on an toilet seat insert with a splash guard is the only way to prevent spraying the bathroom and any supervising adult.
  • Some children will start out urinating and begin to have a bowel movement concurrently.  Oops!  These children often have issues with low tone or digestive problems, and cannot “hold it” long enough to finish urinating and then sit on the toilet to have a bowel movement.  If they have an accident, it could be very upsetting to them and make them less eager to be fully trained.
  • Children with low muscle tone or postural stability issues may need to sit to achieve a safe and stable position.  No one can eliminate when they are unsteady or fearful.

Some children are vocal and clearly tell you what they want to do and why.  Some cannot or will not communicate, but you can figure out what they are thinking.  Some need to be encouraged to give standing a try.  If your son was initially interested and now has lost some of his enthusiasm and is still sitting to urinate, try telling him that it is time to stand like the big guys and see if you can regain some of your momentum in toilet training!

For more information on toilet training children with low muscle tone, check out my other posts such as   Low Tone and Toilet Training: The 4 Types of Training Readiness   as well as my useful e-book.  Here is a post that explains why this unique book will help you move forward with training right away! The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

chris-benson-459919

A Simple Strategy To Improve Your Child’s Posture In A Stokke Tripp Trapp or Special Tomato Chair

 

Therapists often recommend these well-designed seats for kids that need solid foot support, but even the best hip and chest strapping doesn’t always mean that a child is actively using their feet for postural control.

As a young therapist, I used tape, foam, and towel rolls everywhere, as if I was creating a modern sculpture.  For the most part, all I got for my effort was frustration.  Food and force tend to make short work of the most ingenious wedges and supports on a chair used for feeding.  Then I got smarter and decided to make this a lot easier on everyone.

I wanted to share my easiest strategy for helping children place their feet on a foot plate and keep them there:  shoes!

IMG_1290

 

The little guy in the “before” photo has generalized low tone and hypermobility.  His pelvis is reasonably stable using the existing straps on the chair, and he is able to reach forward to finger-feed, partially activating his trunk and hip musculature.  But those feet just tapped away on the footplate, and his legs remained extended at the knee through most of the meal.  He is too little to respond to any verbal prompts for posture, but not completely addicted to gaining sensory input though his feet.  He is there for the food, and the foot movements were his way of gaining sensory input and entertaining himself!

IMG_1289

Non-skid soles, and totally stylish, too!

Just putting on his tiny boat shoes gives him some “grip” on the foot plate, and he stayed in this position for the rest of the meal with our repositioning his body at all!  He still has to develop some hip control so his knees don’t move laterally as he reaches forward.  Using shoes with non-skid soles is an easy hack to help him get some distal stability without constantly touching and repositioning him.  Kids that get a lot of therapy and need almost total help for toileting and dressing really start to hate all our manhandling after a while.

Hope this gives parents and therapists an idea that requires very little effort and can  deliver immediate results!

Wondering how you are going to deal with potty training?  Check out my new e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone.  There is so little useful advice out there for parents of children with hypotonia!  My book as checklists and specific strategies for pre-training, choosing equipment such as seat inserts, and covers the sensory and social/emotional consequences of low tone as it relates to learning this important life skill.

My book is available on my website tranquil babies, at  Amazon and on Your Therapy Source, a great resource for pediatric therapy materials.  Coming soon:  my next book on raising a child with hypermobility.  It will include strategies for positioning, play, ADLs, and school activities.  My web designer suggested that I should add short videos so that you can see demonstrations and equipment/toys that make life easier for everyone!  Please submit comments if you have your own suggestions to make this book a great resource for parents and therapists!

Should Hypermobile Kids Sit On Therapy Balls For Schoolwork?

 

frank-mckenna-184340.jpg

They are everywhere; colorful therapy balls have migrated from the clinic to the classroom.  You can buy a base or a whole chair with a ball attached.  But do kids with hypermobility benefit from using them, or will they create more problems than they solve?

Hypermobility in infants and very young children is common, and decreases over time in typical children.  And then there are the kids with low muscle tone or connective tissue disorders.  These kids do not commonly see a decrease in their loose joints over time.  They do become stronger, and they can become more stable and steady.  But they can still display considerable flexibility over time.

In fact, hypermobility can increase with each overstretched ligament or damaged joint.  It is as simple as basic construction principles:  when the foundation is shaky, the structures around the foundation receive some of the forces from action and movement that the foundation should have absorbed.  A child who has an unstable pelvis will experience more forces in their upper spine and in their knees as the muscles try to compensate for the extra movement at the pelvis.  Over-stretching, excessive tightening of the wrong structures, and damage to joint surfaces are the result of excessive force absorption.

In this situation, another symptom becomes more and more obvious:  fatigue.  Well-aligned joints are designed to decrease effort during movement, like a Swiss clock.  Damaged joints and joints that don’t glide correctly due to lax ligaments and weak muscles require more effort to do the same job.  Hence fatigue sets in just from the extra effort required.  This is true even if the connective tissue that creates muscles and ligaments is of good quality.  Some genetic connective tissue disorders are characterized by incomplete or faulty construction of connective tissue.  These children are starting out with a foundation that is unstable and weak before any forces have been applied.  They will become weak and tired more quickly than a child with the same level of instability but with stronger connective tissue.

While sitting on a therapy ball-chair, the expectation is that the dynamic movement of the ball will activate core musculature and provide a dynamic position that helps a child  achieve core stability.  Sounds great!  But…this assumes that the physical structures needed are capable of doing so, and that the child is also able to write or play, using his arms and hands effectively at the same time.  It also assumes that the child will notice when his alignment has decreased and will take action to prevent compensation.  I think that is a lot to ask of most kids, even most teens.  They just want to get their homework done and over.

Based on all of these concerns, I recommend that children with hypermobility be closely evaluated and monitored by a therapist before they use a therapy ball set-up as a chair for play or schoolwork.  The extra effort to sustain and achieve good alignment is likely to be difficult to manage as they concentrate on a task like handwriting.  The risk is that they fatigue the supporting musculature, recruit compensatory muscles for support, and place more strain on joints and ligaments without awareness.  Yes, I am saying that there is a chance that the use of these chairs with some kids can make things worse.

A better idea for kids with hypermobility?  A more supportive seating set-up.  Reduce the physical demands while your child is working, and leave exercising on a ball to therapy sessions and your therapy home program.  Therapists are skilled at designing programs that target specific muscles to develop balanced control around a joint while protecting it at the same time.  They are also great at assessing work stations and chairs to determine which designs will give your child support and dynamic positioning at the same time without excessive fatigue.  This is one of my favorite tasks as an OT.  I know that a well-designed seating set-up will provide a pay-off every time a child sits down for a meal, plays at a table, or does their homework.  Sometimes it means that joint protection and support have to be blanked with dynamic control, and my training helps families to parse it out for the best result possible for their child.

Looking for more ideas with your hypermobile child?  Check out Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Should Hypermobile Kids Use Backpacks? to start the school year.

I am working on a new e-book on hyper mobility, and welcome parents and therapists to suggest topics that are rarely discussed online or in the clinic.  My goal is to create a book that helps kids thrive!

 

 

Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior

 

johannes-plenio-278099

There is nothing worse than using a scientific study that correlates two variables and assuming causation. Translation:  If behaviors typical of disorder “A” are seen in a lot of people with problem “B”, we cannot assume that “A” is the cause of their behavior.   But we do it all the time.  People who love coffee adore studies that say coffee drinkers seem to live longer.  People who hate to exercise are validated by reports that find the number of heart attacks after exercise “is increasing”.

When it comes to labeling children’s behavior, we should take a couple of big steps back with our erroneous reasoning.  And when the label is ADHD, take three more.  Not because ADHD isn’t a big issue for families.  The struggles of kids, parents and educators shouldn’t be minimized.  We should be cautious with labels when two situations occur:  very young ages and multiple diagnoses that are determined largely by clinical observation, not testing.  Seeing ADHD in a child with hypermobility is one of those situations.

Hypermobility without functional problems is very common in young children.  Super-bendy kids that walk, run, hit a ball and write well aren’t struggling.  But if you have a child that cannot meet developmental milestones or has pain and poor endurance, that is  a problem with real-life consequences.  Many of them are behavioral consequences.

Yes, I said it.  Hypermobility is a motor problem that has a behavioral component.  I don’t know why so little has been written on this subject, but here it is:  hypermobile kids are more likely to fidget while sitting, more likely to get up out of their chairs, but also more likely to stay slumped on a couch.  They are more likely to jump from activity to activity, and more likely to refuse to engage in activities than their peers.  They drape themselves on furniture and people at times.

Why?  Hypermobility reduces a child’s ability to perceive body position and degree of movement, AKA proprioception and kinesthesia.  It also causes muscles to work harder to stabilize joints around a muscle, including postural muscles.  These muscles are working even when kids are asleep, so don’t think that a good rest restores these kids the same way another child gets a charge from a sit-down.

mike-wilson-277159

When a hypermobile child starts to move, the brain receives more sensory input from the body, including joints, skin and muscles.  This charges up a sensory system that was virtually starving for information.  Movement from fidgeting and movement by running around the house are solutions to a child’s sense that they need something to boost their system.  But fatigue can set in very quickly, taking a moving child right back to the couch more quickly than her peers.  It looks to adults like she couldn’t possibly be tired so soon.  If you had to contract more muscles harder and longer to achieve movement, you’d be tired too!  Kids  develop a sense of self and rigid habits just like adults, so these “solutions” get woven into their sense of who they are.  And this happens at earlier ages than you might think.  Take a look at Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children to understand a bit more about this experience for hypermobile kids.

Then there is pain.  Some hypermobile kids experience pain from small and large injuries.  They are more likely to be bruised,  more likely to fall and bump into things, and more likely to report what pediatricians may call “growing pains”.  Sometimes the pain is the pull on weak ligaments and tight muscles as bones grow, but sometimes it isn’t.  Soreness and pain lead some kids right to the couch.  After a while, a child may not even complain, especially if the discomfort doesn’t end.  Imagine having a lingering headache for days.  You just go on with life.  These kids are often called lazy, when in truth they are sore and exhausted after activities that don’t even register as tiring for other children their age.

How can you tell the difference between behaviors from ADHD and those related to hypermobiilty?  I think I may have an idea.

When a hypermobile child is given effective and consistent postural support, is allowed to rest before becoming exhausted (even if they say they are fine), and any pain issues are fully addressed, only then can you assess for attentional problems.  Occupational therapists with both physical medicine and sensory processing training are skilled at developing programs for postural control and energy conservation, as well as adapting activities for improved functioning.  They are capable of discussing pain symptoms with pediatricians and other health professionals.

I think that many children are being criticized for being lazy or unmotivated, and diagnosed as lacking attentional skills when the real cause of their behaviors is right under our noses.  It is time to give these kids a chance to escape a label they may not have.

Looking for more posts on hypermobility?  Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? , Hypermobile Kids, Sleep, And The Hidden Problem With Blankets  and Should Hypermobile Kids Use Backpacks? for useful strategies to manage  hypermobility and support both physical health and functional skills.

Should Hypermobile Kids Use Backpacks?

 

brevite-434273

Yo! A photo shout-out to my old life in Brooklyn! I loved coming to work to see this iconic view!

It is back-to-school season here in the US.  One of the items on shopping lists is a new backpack.  But for kids with low muscle tone or hypermobility, backpacks can be more than a way to carry books and water bottles.  They can be a source of pain, headaches, even numbness in hands and fingers.  The important question isn’t how to lighten the load of a heavy backpack.  It is whether these kids should be using them at all.

The standard recommendations from occupational therapists and orthopedists regarding backpacks are simple:  lighten the load, use both straps (select one with wide straps), and make sure the heaviest items are placed close to the body.  All good suggestions.  But if a child already has pain or weakness around their spine and/or shoulder joints, reduced stability and endurance, and limited ability to judge posture and force, then the picture changes.  Using a backpack may be a significant physical risk, no matter how well designed or used.  And still many kids will insist that it isn’t possible to go without one.

Here are some suggestions that further minimize the risk of injury but can be acceptable to kids who may be sensitive to being perceived as different if they don’t have a backpack:

  • Request a set of the heaviest books for home use.  This can be part of an IEP or a 504 plan, or the school may be willing to do so without anything formal on paper.
  • Select the smallest size backpack possible.  Stores like Land’s End and L.L. Bean  are great sources for a variety of backpack sizes.  Bigger backpacks encourage kids to load more stuff inside.
  •  Have your child carry lighter and fewer items.  Pick the smallest water bottles and travel sizes of anything they really need.  Think “weekend in Paris on a shoestring” not “trekking the Himalayas”.  At least they have a backpack like the other kids.
  • Teach your child to carry their pack in their arms, close to their chest, instead of wearing it.  I know that sounds a little weird.  But if the pack is small to medium in size, this is the best way to carry it to reduce strain on the back and neck.  And they still have a backpack like the other kids.  It might be a long shot to get a kid to change how they carry a pack.  Some kids can respond to reminders of how awful it is to be in pain, and how not being able to sleep or play sports is much worse than carrying that pack in their arms.
  • Considering a rolling case?  Not so fast.  The twisting of the spine and the use of one arm to drag a rolling case may be worse than using a backpack.  Then there is the lifting and lugging of a case up non-ADA stairs.  Out of the frying pan……

Looking for more information about hypermobility, low tone and back-to-school planning?  Check out Does An Atypical Pencil Grasp Damage Joints or Support Function In Kids With Hypermobility? and Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills.  Before you wonder if all that fidgeting and leaning over the desk is a behavior problem, read Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.  There are pencil grips that can really help kids with a weak grasp, so check out The Pencil Grip That Strengthens Your Child’s Fingers As They Write.

 

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!