Tag Archives: hypermobility

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

 

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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.

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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 hyper mobility?  Check out Should Hypermobile Kids Sit On Therapy Balls For Schoolwork? and Should Hypermobile Kids Use Backpacks? for school-related topics and strategies.

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Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health

As the OT on a treatment team, I am the ADL (Activities of Daily Living) go-to person.   Why then, do so few parents ask me what ideas I have about ADLs, especially dental care?  Probably because OT as a profession has developed this reputation as either focused on handwriting or sensory processing.  Maximizing overall health and building skills by improving ADLs is often pushed to the side.  Not today.

People with connective tissue disorders have a greater chance of cavities and more serious dental problems.   Knowing what to do for your child and why it is important helps parents make changes in behavior with confidence and clarity.

Here are my suggestions to support a child that has been diagnosed or is suspected of having Ehlers-Danlos hypermobility or any connective tissue disorder:

  1. Teach good dental hygiene habits early.  Why?  Habits, especially early habits, seem to be harder to dislodge as we age.  Good self-care habits can and should last a lifetime.  Automatically brushing and flossing gently twice a day is cheap and easy.  Make it routine, not optional.  I know how this can become a fight for young children.  This is one of those things that is worth standing your ground on and making it fun (or at least easy) for children to do.  Brush together, use brushes and pastes with their favorite characters, pair it with something good like music or right before bedtime stories, but don’t think that dental care isn’t important.
  2. Research on people with typical connective tissue suggests dental care reduces whole-body inflammation.  Inflammation seems to be a huge issue for people with connective tissue problems, and no one needs increased inflammation to add to the challenges they have already.  Enough said.
  3. Tools matter.  Use the softest toothbrushes you can find, and the least abrasive toothpaste that does the job.  Tooth enamel is also made from the same stuff and skin and bone, and so are gums.  Treat them well.  Water-powered picks and battery-operated brushes may be too rough, so if you want to try them, observe the results and be prepared to back off it becomes clear that your child’s tissues can’t handle the stress.  Toothpaste that is appealing will be welcomed.  Taste and even the graphics/characters on the tube could make the difference.  My favorite strategy is to give your child a choice of two.  Not a choice to brush or not.
  4. Think carefully about acidic foods.  Lemonades, orange juice, energy drinks, and those citrus-flavored gummies all deposit acids on teeth that are also mixed with natural or added sugars.  Those sugars become sticky on teeth, giving them more time to irritate gums and soften enamel.  Easy hack?  Drink citrus/acidic drinks with a straw.  Goes to the back of the mouth and down the hatch.  At the very least, drink water after eating or drinking acidic foods to rinse things out.
  5. Baby teeth count.   Because your young child hasn’t lost even one baby tooth, you may think this doesn’t apply to you.  Those permanent teeth are in there, in bud form.  Children can develop cavities in baby teeth as well as permanent teeth.  Gum irritation is no different for young children, and they are less likely to be able to tell you what they are feeling.  Sometimes the only sign of a cavity in a young child is a change in eating habits.  This can be interpreted as pickiness instead of a dental problem.
  6. Consider sealants and fluoride   I know…some people are nervous about the composition of sealants and even fluoride, which has been in the public water system here in the US for a long time.  I would never criticize a parent who opted out of either.  It is a personal decision.  But be aware that they don’t increase tissue irritation, and they protect tender enamel, tooth roots and the surrounding gums.  At least have an open discussion with your pediatric dentist about the pros and cons.  I am mentioning sealants here specifically because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Looking for more information about ADLs and hypermobility?  Take a look at Easy Ways to Prevent Skin Injuries and Irritations for Kids With Connective Tissue Disorders and Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Low Muscle Tone and Dressing: Easy Solutions to Teach Independence.

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, 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.

Is Your Hypermobile Child JointSmart?

Sometimes it must seem that OTs and PTs are the ultimate buzz killers. “Don’t do gymnastics; it could damage your knees” and “I don’t recommend those shoes. Not enough support”. Just like the financial planner that tells you to sell the boat and save more for a rainy day, we therapists can sound like we are trying to crush dreams and scare families.

Nothing could be further from the truth! Our greatest wish is to see all children live their lives with joy, not pain and restriction. Hypermobile children that grow up understanding their body’s unique issues and know how to live with hypermobility are “joint smart” kids. The kids who force their bodies to do things that cause injury or insist on doing things they simply cannot accomplish face two kinds of pain; physical pain, and a feeling that they are failing for reasons they cannot fathom.

Pain at a Young Age?
Very young children with hypermobility don’t usually see OTs and PTs for pain, unless they have JRA or MD. The thing that sends them to therapy initially is their lack of stability. Some impressively hypermobile kids won’t have pain until they are in middle age. Pain (at any age) usually results from damage to the ligaments, tendons and occasionally the joints themselves. When the supporting tissues of a joint are too loose, a joint can dislocate or sublux (partial dislocation). This is often both painful and way too frequent for hypermobile kids. Strains and sprains are very common, and they happen from seemingly innocuous events. Other tissues may bruise easily as well, creating more pain. Disorders such as Ehlers Danlos syndrome can affect skin and vessel integrity as well as joint tissue, so it is not uncommon to see bruising “for no reason” or larger bruises than you would expect from daily activity.

Becoming JointSmart Starts With Parents
So…does your child even understand that they are hypermobile? If they are under 8, almost certainly not. Do they know that they have issues with being unstable? Probably. They may have been labeled “clumsy” or “wobbly”, even weak. Labels are easy to give and hard to avoid. I suggest that parents reframe these labels and try to take the negative sting out of them. Pointing out that people come in an amazing variety of shapes and abilities is helpful, but the most important thing a parent can do is to understand the mechanics, the treatment and how to move and live with hypermobility. Then parents can frame their child’s issues as challenges that can be dealt with, not deficits that have cursed them. How a parent responds to a child’s struggles and complaints is key, absolutely key.

The first step is teaching yourself about hypermobility and believing that options exist for your child. Ask your therapists any questions you have, even the ones you are afraid to ask, and make sure that your therapist has a positive, life-affirming perspective. Most of us do, but if you are at all anxious or worried, it really helps to hear about what can be done, not just what activities and choices are off the table. If you blame yourself for your child’s hypermobility, get support for yourself so that your child doesn’t feel that they are burdening you. They don’t need that kind of baggage on this journey.

Even when we are optimistic and creative as therapists, it doesn’t mean that we won’t tell you our specific concerns about gymnastics and Crocs for children with hypermobility. We will. It would be unprofessional not to. But we want you and your child to develop the ability to understand your options, including the benefits and the drawbacks of those options, and give you the freedom to make conscious choices.

Now that is being smart!

Low Tone and Toilet Training: Learning to Hold It In Long Enough to Make It to The Potty

 

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If your child can’t stay dry at night after 5, or can’t make it to the potty on time, there are a number of things that could be going wrong.  I won’t list them all, but your pediatrician may send you to a pediatric urologist to evaluate whether there are any functional (kidney issues, thyroid issues, adrenal issues etc.) or structural issues ( nerve, tissue malformations).  If testing results are negative, some parents actually feel worse rather than better.

Why?  Because they may be facing a situation that is harder to evaluate and treat:  low tone reducing sensory awareness and pelvic floor control.

Yes, the same problem that causes a child to fall off their chair without notice can give them potty problems.  When their bladder ( which is another muscle, after all) isn’t well toned, it isn’t sending sensory information back to the brain.  The sensors that respond to stretch aren’t firing and thus do not give a child accurate and timely feedback.  It may not let them know it is stretched until it is ready to overflow.  If the pelvic floor muscles are also lax, similar problems.  Older women who have been pregnant know all about what happens when you have a weak pelvic floor.  They feel like they have to “go”  but can’t hold it long enough to get to the bathroom!   Your mom and your daughter could be having the same problems!!

What can you do to help your child?  Some people simply have their kids pee every few hours, and this could work with some kids in some situations.  Not every kid is willing to wear a potty watch (they do make them) and the younger ones may not even be willing to go.  The older ones may be so self-conscious that they restrict fluids all day, but that is not a great idea.  Dehydration can create medical issues that they can’t fathom.  Things like fainting and kidney stones.

Believe it or not, many pediatric urologists don’t want kids to empty their bladder before bedtime.  They want kids to gradually expand the bladder’s ability to hold urine for a full 8-10 hours.  I think this is easier to do during the day, with a fully awake kid and a potty close at hand.  Too many accidents make children and adults discouraged.  Feeling like a failure isn’t good for anyone, and children with low tone already have had frustrating and embarrassing experiences.  They don’t need more of them.

There are a few ideas that can work, but they do take effort and skill on the part of parents:

First, practice letting that bladder fill up just enough for some awareness to arise.  You need to know how much a child is drinking to figure out what the right amount is, and your child has to be able to communicate what they feel.  This is going to be more successful with children with at least a 5-6 year-old cognitive/speech level.  Once they notice what they are feeling down there right before they pee, you impress on them that when they feel this way that they can avoid an accident by voiding as soon as they can.  Try to get them to create their own words to describe the sensation they are noticing.  That fullness/pressure/distention may feel ticklish, it may be felt more in their belly than lower down; all that matters is that you have helped your child identify it and name it.

You have to start with an empty bladder, and measure out what they are drinking so you know approximately how much fluid it takes them to perceive some bladder stretching.    It helps if you can measure it in a way that has meaning for them.  For me, it would be how many mugs of coffee.  For a child it might be how many mini water bottles or small sport bottles until they feel the need to “go”.  You also need to know how long it takes their kidneys to produce that amount of urine.  A potty watch that is set to go off before they feel any sensation isn’t teaching them anything.

The second strategy I like involves building the pelvic floor with Kegels and other moves.  Yup, the same moves that you do to recover after you deliver a baby.  The pelvic floor muscles are mostly the muscles that you contract to stop your urine stream.  Some kids aren’t mentally ready to concentrate on a  stop/start exercise, and some are so shy that they can’t do it with you watching.  But it is the easiest way to build that pelvic floor.  There are other core muscle exercises that can help, like transverse abdominal exercises and pelvic tilt exercises.  Boring for us, and more boring for kids.  But they really do work to build lower abdominal strength.  If you have to create a reward system for them to practice, do it.  If you have to exercise  with them, all the better.  A strong core and a strong pelvic floor is good for all of us!

Finally, don’t forget that the same things that make adult bladders edgy will affect kids.  Caffeine in sodas, for example.  Spicy foods.  Some medications for other issues irritate bladders or increase urine production.  Don’t forget constipation.  A full colon can press on a full bladder and create accidents.

Interested in learning more about toilet training?  My e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone is available on my website, tranquil babies.  Just click ‘e-book” on the ribbon at the top of the home page, and learn about my readiness checklists, and how to deal with everything from pre-training all the way up to using the potty in public!

 

 

 

 

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!