Tag Archives: Ehlers-Danlos

Is Your Child With Low Tone “Too Busy” to Make it to the Potty?

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Since writing my first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, I have fielded a ton of questions about the later stages of potty training.  One stumbling block for most children appears to be “potty fatigue”.  They lose the early excitement of mastery, and they get wrapped up in whatever they are doing.  What happens when you combine the effects of low tone with the inability of a  young child to judge the consequences of delaying a bathroom run?  This can lead to delaying a visit to the bathroom until it is too late.  Oops.

Kids with low tone often have poor interoceptive processing.  What is that?  Well, interoception is how you perceive internal sensory information.  When it comes to toileting, you feel fullness in your bladder that presses on your abdominal wall, in the same way you feel a full stomach.  This is how any of us know that we have to “go”.  If you wait too long, pressure turns to a bit of pain.  Low muscle tone creates a situation in which the stretch receptors in the abdominal muscles and in the bladder wall itself don’t get triggered until there is a stronger stimulus.  There may be some difficulty in locating the source of pressure as coming from the bladder instead of bowel, or even feeling like it could be coming from their back or stomach.  This leads to bathroom accidents if the toilet is too far away,  if they can’t walk fast enough, or if they cannot pull down their pants fast enough.  You have to work on all those skills!

Add in a child’s unwillingness to recognize the importance of the weak sensory signals that he or she is receiving because they are having too much fun or are waiting for a turn in a game or on a swing.  Uh-oh.  Not being able to connect the dots is common in young children.  That is why we don’t let them cross a busy street alone until they are well over 3 or 4.  They are terrible at judging risk.  Again, this means there are skills to develop to avoid accidents.

What should parents do to help their children limit accidents arising from being “too busy to pee?”

  1. Involve kids in the process of planning and deciding.  A child that is brought to the potty without any explanations such as “I can see you wiggling and crossing your legs.  That tells me that you are ready to pee” isn’t being taught how to recognize more of their own signs of needing the potty.
  2. Allow kids to experience the consequences of poor choices.  If they refused to use the potty and had an accident, they can end up in the tub to wash up, put their wet clothes in the washer, and if they were watching a show, it is now over.  They don’t get to keep watching TV while an adult wipes them, changes them, and cleans up the mess!
  3. Create good routines.  Early.  Just as your mom insisted that you use the bathroom before leaving the house, kids with low tone need to understand that for them, there is a cost to overstretching their bladder by “holding it”  Read  Teach Kids With Ehlers-Danlos Syndrome Or Low Tone: Don’t Hold It In! to learn more about this.  The best strategy is to encourage a child to urinate before their bladder is too full, make potty routines a habit very early in life, and to develop the skills of patience stretching Stretch Your Toddler’s Patience, Starting Today!  from an early age.  Creating more patience in young children allows them to think clearly and plan better, within their expected cognitive level.

Looking for more information on managing daily life with your special needs child?

I wrote three e-books for you!

My e-book on toilet training, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, and my e-books on managing pediatric hypermobility, are available on Amazon as read-only downloads, and on Your Therapy Source as printable downloads.  The JointSmart Child:  Living and Thriving With Hypermobility  Volume   One:  The Early Years and Volume Two:  The School Years are filled with strategies that parents and therapists can use immediately to improve a child’s independence and safety.

Your Therapy Source has bundled my books together for a great value.  On their site, you can buy both the toilet training and the Early Years books together, or buy both hypermobility books together at a significant discount!

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Should Your Hypermobile Child Play Sports?

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This is one of the most difficult questions I field from parents of children over 5.  Every parent wants their child to receive the social, emotional and physical benefits from participating in sports.  They also know that there are greater risks for hypermobile kids.

Kids with hypermobility fall on a very wide spectrum.  Some are strong and flexible, allowing them to compete in gymnastics and dance with ease or even excellence.  Some kids are prone to injury; they spend more time on the sidelines than on the field.  And some need to have P.E. classes adapted for them or substituted with physical therapy.

Wherever your child lands on this spectrum of ability, it is likely that they want to be able to participate in sports, and you want them to be able to do so as well.  Engaging in sports delivers a lot of positives:  conditioning, ability to work in a group, ability to achieve goals and handle failure/loss, etc.  Most therapists and doctors will say that being as physically active as possible enhances a child’s overall wellness and can be protective. But every child is different, and therefore every solution has to be tailored to the individual.

Here are a few questions to guide your assessment as a parent (and involve your child the decision, if appropriate):

  1. Is this activity a high or low-risk choice?  High-risks would include heavy physical contact, such as football.  Tennis requires hitting a ball with force and rapid shifts of position with lots of rotation of the trunk and limbs.  I am going out on a limb, and say that ballet on-pointe is a high-risk choice for kids with lower-body weakness and instability.  The question of risk in any activity has to be combined with what is risky for each child.  Your doctor, PT, OT or other specialist can help you identify what the risks are for your child.
  2. Will endurance be an issue, or will there be flexible breaks?  Activities that require a lot of continuous running, such as soccer and lacrosse, may be harder than dance classes.  Swimming is often suggested as an easier sport, but think about  the strokes.  Competitive swimming is a lot of resistance work against the water with repetitive motions of the shoulders.  Some strokes are more difficult than others, so examine each stroke as well as the frequency, duration and intensity your child intends to pursue.
  3. Are there ways to support performance, such as braces, kineseotaping or equipment modifications?  A great pair of skis or shoes can help tremendously in sports.  So can targeted exercises from a physical therapist or a well-trained coach that understands the needs of the hypermobile athlete.  Your child may not be able to be on a travel team due to the intense demands and greater risk of injury due to fatigue/strain, but they will be very satisfied being on a local team.  For the smallest kids, even changing your trike can make a difference Picking The Best Trikes, Scooters, Etc. For Kids With Low Tone and Hypermobility.  To remain safe in a sport, many hypermobile kids need to keep working with a PT.  Do you have the insurance or the cash to pay for this expense?
  4. Will your child report pain or injury and ask for assistance?  Will your child accept limitations on their activity level? Some kids are very proactive, and others will try to hide injuries to stay in the game or on the team.  Without this ability to communicate lived experience,  coaches and parents find it harder to make the right/safe choices.  Sometimes it’s an age thing, where young children aren’t good communicators or teens are defending their independence at the cost of their health.  If you think that your child will hide injuries or push themselves past what is safe for their joints, you will have to think long and hard about the consequences of specific activities.  Read For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps. and    Joint Protection And Hypermobility: Investing in Your Child’s Future for more information about teaching your child to handle fatigue and pain better.
  5. Within a specific sport, are there positions or types of participation that are well-suited for your child’s skills and issues?  Skiing wide green (easy) slopes and doing half-pipe snowboard tricks are at distinct ends of the spectrum, but a hypermobile child may be quite happy to be out there in any fashion as long a they are without pain or injury.  Goalies are standing for longer periods but running/skating less.  Endurance running and sprinting have very different training and participation requirements.  There may be no options for a child that insists on running cross-country when their body cannot handle it.
  6. Sadly, hypermobility can progressively reduce or alter safe participation in sports.  Not for all kids, and not even for kids with current issues.  Children can actually be less hypermobile at 12 than they were at 3.  They build muscle strength as well as they grow.   It can happen.  Therapy and other strategies like nutrition and orthotics can make huge improvements for hypermobile kids who want to play sports.  But too often, the child who is pain-free in dance class at 7 isn’t pain-free at 14.  This doesn’t have to be a tragedy.  Kids can be taught to adjust and adapt so that they are playing and working at their current maximal level.  Your child may find that changing sports is easier than struggling or suffering in a sport that is now difficult for them.  Good physical or occupational therapists can help you figure out how to make athletic activities fun and safe!
  7. Are you sad that they are losing their passion?  Try to separate your sadness from their sadness.  It is OK to feel your feelings.  If your child has a heritable condition such as EDS, and you didn’t know you had it yourself until your child was diagnosed, you may be feeling a great deal of (unfounded) guilt.  Even if you knew the you could pass on a HDCT, the truth is that you probably also are their greatest fan and supporter.  Your child has someone in their life who really knows what they are going through.  That is helpful, even though you might not see it right now.  Think about how you felt as a child when you didn’t understand why you were dropping things or not as skilled as other kids.  Your child knows that you know how they feel.  Working through those feelings will help you see things clearly with your own child.  Avoiding your feelings will keep you mired in them.  Only after you come to terms with how you feel will you be able to help your child see that their passions are evolving and they can create new passions in many areas.  The bigger issue is handling the feeling of vulnerability that come with chronic disorders and an uncertain future.
  8. Get your professionals to support your decisions and let them take some of the pressure off of you.  Kids are often really good at blaming parents, and parents can be vulnerable to the guilt trips kids send out.  If their doctors or therapists are telling them about the risks they face, you won’t seem like the only person that is trying to rob them of fun.  The truth is that children, including teens, cannot imagine that the damage they do today could shorten their professional career in 20 years, or contribute to surgeries in 30 years.  This is the sad truth of hypermobility:  damage is often cumulative and what is only a small discomfort today can grow into a serious loss of ability later.  No one will be able to predict your child’s future, but it is possible to identify a range of potential risks.  When you understand the risks, you are able to make decisions with more confidence.

Does your hypermobile child play a musical instrument?  Then read Hypermobility and Music Lessons: Is Your Child Paying Too High a Price for Culture? for some insights into the ways that parents can make playing less of a physical risk and increase the wonderful benefits of musical instruction.

For more information regarding hypermobility, please read Hypermobile Kids, Sleep, And The Hidden Problem With Blankets ,  Can You K-Tape Kids With Connective Tissue Disorders?  and Should Hypermobile Kids Use Backpacks?

Looking for even more practical strategies to raise your hypermobile child?

 I just wrote two e-books for you! 

The JointSmart Child:  Living and Thriving With Hypermobility  Volume One:  The Early Years  and the companion Volume Two:  The School Years are filled with practical strategies to help you feel empowered and in control.

Volume One focuses on the basics with children 0-5: utensil use, potty training (I wrote a separate book on that subject!) picking out the right high chairs and bikes, teaching your child how to move safely, and even how to communicate with your teachers and doctors.  It is available as a read-only e-book on Amazon or as a clickable and printable download on Your Therapy Source.

Volume Two reviews all the principles of managing hypermobility in Volume One so you don’t have to buy both books, and takes things into the classroom, the sports field or court, and out into the wider world.  There are strategies for kids 6-12 to build handwriting and keyboarding, pick the right musical instrument, and manage the comments and expectations of family and friends.

The appendix in Volume Two is much larger.  It has forms and checklists that parents and therapists can use with teachers, babysitters, coaches, and even doctors.  There is a form for your district meeting to get more of what you need at school, and even recipes to build motor skills while having fun!  It is available as a read-only e-book on Amazon and very soon on Your Therapy Source!

 

Is your child even older?

One issue for tweens and teens with hypermobility is looking at the future clearly in terms of school, jobs, and careers.  Take a look at  Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues  and Teens With Chronic Illness Or Disability Need A Good Guide: Read “Easy For You To Say” for some strategies to help your child think clearly but positively about their future.

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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, hypermobile kids have sensory processing issues too!   And they deserve more effective treatment for these issues than they typically receive.

Lack of joint integrity, especially decreased joint stability, results in a decrease in proprioception and kinesthesia.  These two under-appreciated (and poorly explained) 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 you think your pediatrician understands why your child can’t grasp a pencil but can squeeze the @@#$% out of Play-Doh, good luck.  

Who will believe AND understand you?  Your OT!

Most of the scientific research into proprioception and hypermobility has been done by PTs, and is focused on proprioception in the leg. They are interested in how it affects mobility.

The problems with poor proprioception and kinesthesia go far beyond walking.  Essentially no research has been done on hand function or the practical application of research to living skills of any kind when it comes to hypermobility syndromes and proprioception. But OTs can teach you and your child’s classroom staff about the connections between sensory processing and motor performance.  They can help your child improve skills based on their knowledge of neurology and function.

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

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

Why do children with hypermobility have proprioceptive and kinesthetic processing problems?  Because information from your body is transmitted is through receptors embedded in the tissue within and surrounding the joints.   These receptors respond to muscle and tendon stretch, muscle contraction, and pressure within the joint.   Joint hypermobility creates less stimulation (and thus less accurate information) to these sensory receptors.  Like the game at the carnival, the ball isn’t hit hard enough to ring the bell at the top of the post.  The sensory information coming into the brain is either insufficient or delayed (or both), and therefore the brain’s output of directions to achieve postural stability or dynamic movement is correspondingly poor.

This shows up as a collapsed posture, difficulty quickly changing positions to catch a ball or leap over an obstacle, a heavy-footed gait, and a whole lot of other difficulties.  One of the most common issues are the awkward or extreme positions these kids get into, and sometimes strongly prefer.  They look like they should be in pain, but they aren’t.  Read more about what to do when your child insists on sitting in a position that could harm them in Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way.

What should parents be looking for when they wonder if proprioception is affecting their child’s functional performance?

Can children with hypermobility improve their sensory processing and thereby improve the quality of their movements in daily life?  Absolutely.

Because sensory processing is a complex skill, addressing each component of functional performance will give the hypermobile child more skills.  Building muscular strength within a safe range of joint movement is only one aspect of treatment.  If your child is experiencing difficulty in music lessons or when playing sports, please read Should Your Hypermobile Child Play Sports? and  Hypermobility and Music Lessons: How to Reduce the Pain of Playing for some useful ways to think about what you say to your child.  Positioning a child to give them more sensory feedback while in action is essential.  Increasing overall sensory processing by using other sensory input modalities is often ignored but very helpful.

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I’ll bet that you didn’t think of toileting as a proprioceptive issue.  When thinking about toileting the hypermobile child, the biggest problem is often an interoceptive issue; the kind of proprioception that involves internal organs.  This can make it difficult for hypermobile kids to feel when they need to “go” in time to get to the bathroom, but it can also create retention.  The urge isn’t very powerful for them. Read For Kids Who Don’t Know They Need to “Go”? Tell Them to Stand Up and Teach Kids With EDS Or Low Tone: Don’t Hold It In!.  And of course, you might want an e- book that will help you with toilet training.  I wrote it for youThe Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

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

 

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My favorite sensory processing strategy for hypermobile kids?  The use of rhythmic music during movement.

Therapeutic music programs that use the powerful effects of sound on the brain are effective treatments for hypermobile children.  Using sound to improve vestibular processing increases the quality and the speed of response to a loss of balance.  Muscle tone increases in children while they are listening through stimulation of  midbrain centers, and this combo of improved tone and improved vestibular processing helps children improve their safety while moving and even while sitting still. For all of you with kids who fall off chairs while doing nothing, you know what I mean!  I have been trained in the use of Therapeutic Listening through Vital Sounds, and I really like to ease of using Quickshifts.  These short pieces of music that entrains both sides of the brain for activation and attention can really make a change in hypermobile kids.  There are other programs that work well too.  I prefer Vital Links’ Quickshifts for greater options and ease of use in a daily schedule Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  You download their free app and buy the music for your phone!  The most significant benefit to adding a listening program to a home program for any child or adult is that there is no stress on connective tissue, even for kids that are in a lot of pain and have very limited mobility.  For kids that have POTS as well as hypermobility, this can be a real advantage.  The middle ear is connected intimately to the vagus nerve, which impacts the autonomic nervous system.  Treatment of the vestibular system can directly improve the ability of the autonomic nervous system, without the risks associated with many activities.

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

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

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

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

Looking for a manual that empowers you and your hypermobile child?

I wrote 2 e-books just for you; one for the smaller kids, and one for the school-age child!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One: The Early Years is my e-book for the parents and therapists of young children, packed with strategies that make life easier and build a toddler’s and preschooler’s skills!

It is available as a read-only download on Amazon and as a printable and clickable download at Your Therapy Source    YTS has it bundled with my book on toilet training for a complete set at a discounted price.

Read how my new e-book can help you today:  Parents of Young Hypermobile Children (and Their Therapists) Finally Get Their Empowerment Manual!

Need a book for older kids?  Here you go!

The JointSmart Child:  Living and Thriving with Hypermobility Volume Two:  The School Years is my newest book, filled with even more information for kids ages 6-12.  There are strategies to help them write and play sports with less risk of injury, plus methods to communicate with teachers and doctors to get the services your child needs.  Learn how to pick the best chairs, bikes, even the right clothes to make your child safer and more independent.  Read more about it here:  Parents and Therapists of Hypermobile School-Age Kids Finally Have a Practical Guidebook!  It is available on Amazon as a read-only download and as a printable e-book on Your Therapy Source!

Does your hypermobile child also have toileting issues?  

My e-book, The Practical Guide To Toilet Training Your Child With Low Muscle Tone, could help you make progress today!  

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

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