Category Archives: hypermobility

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.
  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.
  6. Consider sealants.  I know…some people are nervous about the composition of sealants.  I would never criticize a parent who opted out of sealants.  It is a personal decision.  But be aware that they don’t increase tissue irritation and they protect tender 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 because some parents aren’t aware that this treatment option can reduce cavity formation and gum deterioration.

Can Hypermobility Cause Speech Problems?

 

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As a pediatric OT, many of my clients have speech and feeding problems that are attributed to low muscle tone.  Very often, that is where assessment ends.  Perhaps it shouldn’t.  Joint hypermobility can create issues such as dysarthria, disfluency and poor voice control.  It isn’t only about muscles and muscle coordination.  Being able to identify all the causes of speech delays and difficulties means better treatment and better results.

I have had the privilege to know a handful of master speech pathologists whose manual evaluation skills are amazing.  These clinicians are capable of identifying joint laxity and poor tissue integrity (which contribute to injury, weakness and instability) as well as identifying low muscle tone, sensory processing issues and dyspraxia.  They can assess whole-body stability and control instead of ending their assessment at the neck.

It is more difficult to clearly differentiate low muscle tone from hypermobile joints in young children.  Assessing the youngest clients that cannot be interviewed and do not follow instructions carefully (or at all!)  is a challenge.  Many times we are forced to rely on observation and history as much as we use responses from direct interaction with a child.  In truth, laxity and low tone often co-exist.  Lax joints create overstretched or poorly aligned muscles that don’t contract effectively.  Low muscle tone doesn’t support joints effectively to achieve and maintain stability, creating a risk for overstretching ligaments and injuring both tendons and joint capsules.  A vicious cycle ensues, creating more weakness, instability and more difficulties with motor control.

Some children that are diagnosed with flaccid dysarthria, poor suck/swallow/breathe synchrony, phonological issues and poor respiratory control may be diagnosed later in life (sometimes decades later) as having Ehlers-Danlos Syndrome or generalized benign joint hypermobility syndrome.   They often drop the final sounds in a word, or their voice fades away at the end of a sentence when they are younger. These kids might avoid reading or speaking front of the class when older.  This isn’t social anxiety or an attitude problem.  They are struggling to achieve and maintain the carefully graded control needed for these speech skills.

You may notice a breathy-ness to their voice that makes them sound more like their grandparents than their peers.  Children that avoid running in sports like soccer or hockey aren’t always unable to continue because they are globally fatigued or in pain.    Being unable to stabilize their trunk results in inefficient muscular recruitment and limited grading of breath.  Ask any runner or singer and they will tell you what that means: game over.

If your child is struggling with these issues and isn’t receiving speech therapy, now may be the time to explore it.  You and your child may be relieved to learn that there is effective therapy out there!

 

 

Problems With Handwriting? You Need The Best Eraser

 

 

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A good eraser can make a frustrated child more willing to fix writing errors.  A bad eraser confirms their failure as a writer.

Occupational therapists in some schools hand out HWT pencils and a variety of pencil grips like candy, but many forget about how important it is for kids to erase mistakes successfully in order for their work to be truly legible.  The Pentel Hi-Polymer eraser is the one that gets the job done.

I will confess that I did not discover this eraser on my own.  A smart parent turned me onto this amazing school tool, and I am over the moon about how much it helps children complete their writing assignments.   It would be almost criminal to let kids go back to school this fall with those nasty pink erasers that leave more of a mess than they remove!

Here is an example of how well this eraser works.  I used my fave mechanical pencil for younger children, the one I blogged about in Great Mechanical Pencils Can Improve Your Child’s Handwriting Skills , and wrote a few numbers in the darkly shaded boxes of a Handwriting Without Tears sheet.  Notice that the shading wasn’t removed along with the pencil marks:

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Numbers 5 and 6 have been erased so well that tracing-over the original mistake is impossible!

Here are a few reasons to add this eraser to your back-to-school list:

  • While large enough for small hands to use, it is not so big that it is difficult for children to control.  Think erasing isn’t a real skill?  Take a look at Teach Your Kindergartener How To Erase Like a Big Kid
  • It is latex-free, a necessity for children with latex sensitivity.
  • There are fewer eraser “crumbs” created during use, so less mess (for parents) to clean up, and less visual and tactile distractions for kids with ADHD, SPD and ASD.
  • This eraser doesn’t require substantial pressure to remove marks.   Great for kids with Ehlers-Danlos, JRA, and all the other conditions where strength and endurance are concerns for handwriting.
  • Because of it’s softness and effectiveness, it rarely tears paper, even the thin paper commonly used for school worksheets and workbooks.

Pentel Hi-Polymer erasers are very affordable, and commonly come in packs of three. This is helpful when you know in your heart that the first two will be lost before the week is over, never to be seen again.  When your child realizes that this eraser helps them finish their homework a bit faster (you might want to mention this if they don’t notice it right away), they will work harder to hold onto that last one!

Joint Protection for 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.

Good luck, and please share your best strategies in the comments section so other parents and therapists learn from you!

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.

My book is available on my website tranquil babies, at Amazon, and at yourtherapysource.com.

The Difference Between Special Needs and Typical Potty Training Approaches: Address Sensory/Behavioral Issues and Use Consistent Routines

tai-jyun-chang-270109.jpgAfter writing The Practical Guide to Toilet Training Your Child With Low Muscle Tone, I have been asked what was different about my book. There must be 100 books on potty training special needs kids. What did I do differently? Simple. I am an occupational therapist, so I have no choice but to use my 360 degree viewpoint to target all the skills needed to do the job. Seeing the path to independence in this way was second nature to me, but not to parents of kids with special needs. Time to offer some support!

The books I reviewed before I started writing were great, but every one lacked at least one important feature. If the authors were psychologists and teachers, they weren’t fully comprehending or directly addressing the sensory and motor aspects of a very physical skill. Oops.

OTs are always aware of the cognitive and social/behavioral components of activities of daily living, but we also have a solid background in physiology and neurology as well. That makes us your go-to folks for skills like toilet training. And that is a major reason why The Practical Guide is so helpful to the frustrated parents of children with SPD,autism, Down Syndrome, Ehlers-Danlos Syndrome, and a host of other diagnoses that result in delays or difficulties with muscle tone and potty training independence. It explains in detail how low tone creates sensory, motor, and social/behavioral problems, and how to address them. Knowledge is power, and knowledge leads to independence.

The other huge difference is that developing consistent sensory-motor-behavioral routines matter more for these kids. Tone isn’t a constant, as anyone with a child that has low tone knows all too well. Fatigue, illness, even a very warm day; these all make kids less stable and can even reduce their safety. Having a really solid routine makes movements easier to execute and more controlled when situations aren’t perfect. Kids with normal muscle tone can shift their behavior on the fly. They can quickly adjust and adapt movement in ways that children with low tone simply cannot. It isn’t a matter of being stubborn or lazy. Kids with low tone aren’t going to get the sensory feedback fast enough to adjust their motor output.

Good motor planning on a “bad day” occurs for these kids when they have well-practiced routines that support safe and smoothly executed movements. What makes the difference isn’t intelligence or attention. It is recalling a super-safe routine effortlessly. This is completely attainable for kids who have speech or cognitive issues as well as issue with low tone and instability. It may take them longer to learn the routine, but it pays them back with fewer accidents and fewer tears.

To learn more about my book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone, visit my website, tranquil babies.com, or view it on Amazon.com!ferris-wheeltai-jyun-chang-270109

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 toileting habit 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. This is known as poor interception, a sensory-based issue that is rarely discussed, even by Its that are all over other sensory processing issues.  These kids 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.

For little girls who are at a higher risk of UTIs, I tell parents to teach wiping after urination as a “pat-pat” rather than the standard recommendation of front-to-back wiping.  Why?  Because children aren’t really good at remember that, and even if you are standing right their reminding her, she may just wipe back-to-front because that is easier and more natural.  “Pat-pat” is equally easy and reduces her risk of fecal contamination.  Cannot tell you I have done hard research on this, but then, I have common sense.  It is the smarter move.

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. You can also buy it on Amazon.com. My e-book is designed to help parents, not just offer statements like “Don’t push your child” and “Look for signs of readiness”. That doesn’t help anyone! The book has useful 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!