Category Archives: hypermobility

Teach Kids With EDS and Low Tone: Don’t Hold It In!

People who have read my blog are aware that I wrote a book on toilet training, The Practical Guide to Toilet Training Your Child With low Muscle Tone. This comment didn’t make it into the book , but perhaps it should have. Children that have issues with muscle tone or connective tissue integrity, or both, risk current and future issues with incontinence if they overstretch these structures too far. We teach little girls to wipe front-to-back to prevent UTIs. We need to teach all children with these issues to avoid “holding it in” in the same manner that we discourage them from w-sitting.

I am specifically speaking about kids with Ehlers Danlos Syndrome, Down Syndrome and all the other conditions that create pelvic weakness and control issues. But even if your child has idiopathic low tone, meaning that there is no identified cause, this can still be a current or future problem.

The effects of low tone and poor tissue integrity on toilet training are legion. Many of them are sensory-based, a situation that gets very little acknowledgment from pediatricians. These children simply don’t feel the pressure of their full bladder or even a full rectum with the same intensity or discomfort that other children experience. They are “camels” sometimes, with no urge to pee, and have to be reminded to void. It can be convenient for the busy child to keep playing rather than go to the bathroom, or it can save embarrassment for the shy child who prefers to wait until she returns home to “go”.

This is not a good idea. The bladder is a muscle that can be overstretched in the same manner as the hip muscles that are the concern of children who “W-sit”. Don’t overstretch muscles and then expect them to work well. The ligaments that support the bladder are subject to the same sensory-based issues that affect other ligaments in the body: once stretched, they don’t bounce back. A weak pelvic floor is nothing to ignore, and age doesn’t help anyone. Ask older women who have had a few pregnancies how that is going for them. The stretch receptors in the abdomen that should be telling a child with low tone that it is time to tinkle just don’t get enough stretch stimulation to do so when they have been extended too far. The time to prevent problems is when a child is developing toileting habits, not when problems have developed.

So….an essential part of toileting education for children is when to head to the bathroom. If your child has low muscle tone or a connective tissue disorder that creates less sensory-based information for them, the easiest solution is a routine or a schedule. They use the bathroom whether they feel they need to or not. The older ones can notice how much they are voiding, and that tells them that they really did need to “go”. Understanding that the kidneys will fill up a bladder after a large drink in about 35-45 minutes is helpful. But it can be a trip after a meal, before leaving the house, or when returning home. As long as it is routine and relatively frequent, it may not matter how a toileting schedule is created. Just make sure that as they grow up, they are told why this is important. A continent child may not believe that this could prevent accidents, but a child who has a history of accidents may be your best student.

The good news in all of this? Perceiving sensory feedback can be improved. There are higher-tech solutions like biofeedback, but children can also become more aware without tech. There are physical therapists that work on pelvic and core control, but some children will do well with junior Kegel practice and some education and building awareness of the internal sensations of fullness and urgency.

Good luck, and please share your best strategies here for other parents!!

If you are interested in purchasing my book, please visit my website, tranquil babies.com, and click on “e-book” at the top ribbon. It is filled with readiness checklists and detailed strategies for every stage of training!

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!

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

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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 doctors understand why your child curls his fingers around a pencil but can squeeze the @@#$% out of clay, good luck. Most of the hard science has been done by PTs on proprioception in the leg, and there isn’t a lot of it. But OTs know a lot about the connections between sensory processing and motor performance.

Consider the process for touch-typing to better understand these senses.  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.  Your awareness of the degree of movement in a joint while 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 “e”, but far enough to have been a “w”.

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 less accurate information) to these sensory receptors.  The information coming into the brain is insufficient or delayed, and therefore the output of 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.

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.  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.

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.  This program can be done without stressing fragile joints, which is 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.  Programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children.  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!

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.

Child Writing Too Lightly on Paper? It Might Not Be Hand Strength Holding Him Back

If your child barely makes a mark when he scribbles or writes, most adults assume that grasp is an issue. Today’s post suggests that something else could be the real reason for those faint lines.

Limitations in postural and bilateral control contribute far more to lack of pressure when writing  than most parents and teachers realize.  For every child in occupational therapy that is struggling to achieve good grasp, I see three whose poor sitting posture and inability to get a stable midline orientation are the real issues.

Think about it for a minute:  if you sat with your non-dominant (not the writing hand) hand off to the side and you shifted your body weight backward in your chair, how would you be able to use sufficient force on a pencil or a crayon?  Try this right now.  Really.  You would have to focus on pressing harder while you write and hope your paper doesn’t slip around.  That would require your awareness and some assessment of your performance.  Children don’t do “awareness and assessment” very well.  That ability comes from frontal lobe functions that aren’t fully developed in young children.  But they can learn where to place their “helper hand”, and that sitting straight and shifting forward is the correct way to sit when you scribble or write.

If a child has sensory processing or neuromuscular issues such as cerebral palsy, Ehlers-Danlos Syndrome or Down Syndrome, achieving adequate postural stability may take some effort on the part of the therapists and the teacher.  Well worth it, in my experience.  There are easy hacks that help kids; good equipment and good seating that won’t cost a fortune or inconvenience the class.  Every child can learn that posture is important for writing.  But the adults have to learn it first.  Kids take their cues from what adults appear to value, and if they figure out that they are allowed to slump or lean, they almost always will.

I am doing a lecture on pre-writing next week, and I intend to make this point, even though the emphasis of my lecture is on the use of fun drawing activities to prepare children to write and read.  Why?  Because it may be the only time these preschool teachers hear from a pediatric occupational therapist this year, and I want to make a difference.  Understanding the importance of postural control in pre-writing and handwriting could help struggling kids, and make decent writers into stars!

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!

 

 

 

 

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

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

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

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

Do these funny grasp patterns reduce legibility?  Only sometimes.  There are atypical grasp patterns that are good choices for children with hypermobility.  One is to place the shaft of the pencil directly between the index and third finger, and allow the thumb to support the side of the pencil.  The knuckle joints of those fingers provide more stability than the standard tripod grasp.  I allow preschoolers who need to keep more than 3 fingers on the shaft of the pencil to do so, and wait to see what happens as they develop more overall hand control.  Forcing a tripod grip isn’t always in their best interest now or for the future.

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

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

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