Tag Archives: hypermobility

Is Benign Joint Hypermobility Syndrome (BJHS) All That Benign?

 

lubomirkin-XKpPsuuGE_Q-unsplash

Throwing the bathwater out and keeping the baby

Many of the children I treat every year have some degree of hypermobility.  Some of them arrive on my caseload with diagnoses such as Prader-Willi syndrome or Down syndrome.  Their low muscle tone is understandable, and their hypermobility has been easily observable since birth.

There are always a few children that have been given the BJHS diagnosis.  Most of them have issues with delayed gross and fine motor development.  Many of them are already wearing orthotics.  Many of them struggle to communicate, demonstrating a level of instability and difficulty controlling their trunk, neck and mouth.  Few of them are complaining of pain, but most have low endurance, poor stability in dynamic positions, and use compensatory patterns to move.

So is this all that benign?  I don’t think so.  These kids are at huge risk for cumulative and progressive joint, ligament, and muscle issues.  They are also at risk for social and emotional issues that arise from their inability to keep up with their peers and the difficulty of fulfilling the expectations of school, friends and family, as well as struggling to handle their own desire to move and grow while fighting hypermobility.  Almost all of the children I have treated with BJHS have average to above average intelligence and display sensory-based issues; sensory seeking, sensory aversion or sensory modulation.

Since therapists don’t provide a diagnosis, and doctors don’t provide most of the treatment these kids need, it appears to me that the only reason a doctor would use the word “benign” is that there is no disease process and there isn’t anything much that the standard ammunition doctors use (surgery and medication) can do for these kids.  It is easier than saying “I don’t have anything to offer your child except to refer to therapists and monitor until a problem that I CAN treat comes up”.

If your child has been given the diagnosis of BHJS, read more on this site about the effects of hypermobility, such as How To Correctly Reposition Your Child’s Legs When They “W-Sit” and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  There are a number of additional or alternative diagnoses that these kids eventually receive, including EDS.  If you are a parent, learn as much as you can about related diagnoses and discuss these with your therapists and doctors.  But don’t assume that what your child is experiencing is benign.

francois-verbeeck-A-nkh5qGYv8-unsplash

 

Advertisements

Hypermobility Or Low Tone? Three Solutions to Mealtime Problems

 

sara-darcaj-OZ5t_ZsfwBM-unsplash

 

Many young hypermobile kids, with and without low muscle tone, struggle at mealtimes. Even after they have received skilled feeding therapy and can chew and swallow safely, they may continue to slide off their chair, spill food on the table (and on their body!) and refuse to use utensils.

It doesn’t have to be such a challenge.  In my new e-book coming out this year, I will address mealtime struggles.  But before the book is out there, I want to share three general solutions that can make self-feeding a lot easier for everyone:

  1. Teach self-feeding skills early and with optimism.  Even the youngest child can be taught that their hands must be near the bottle or cup, even when an adult is doing most of the work of holding it.  Allowing your infant to look around, play with your hair, etc. is telling them “This isn’t something you need to pay attention to.  This is my job, not yours.”  If your child has developmental delays for any reason, then I can assure you that they need to be more involved, not less.  It is going to take more effort for them to learn feeding skills, and they need your help to become interested and involved.  Right now.  That doesn’t mean you expect too much from them.  It means that you expect them to be part of the experience.  With a lot of positivity and good training from your OT or SLP, you will feel confident that you are asking for the right amount of involvement. Read Teach Spoon Grip By Making It Fun And Sharing a Laugh With Your Child and Teach Utensil Grasp and Control…Without the Food! for some good strategies to get things going.
  2. Use excellent positioning.  Your child needs a balance of stability and mobility.  Too much restriction means not enough movement for reach and grasp.  Too much movement would be like eating a steak while sitting in the back seat of your car doing 90 mph.  This may mean that they need a special booster seat, but more likely it means that they need to be sitting better in whatever seat they are in.  Read Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course Strategy for more ideas on this subject.  Chairs with footplates are a big fave with therapists, but only if a child has enough stability to sit in one without sliding about and can actively use their lower legs and hips for stabilization.  Again, ask your therapist so that you know that you have the right seat for the right stage of development.
  3. Use good tableware and utensils.  If your child is well trained and well supported, but their plates are sliding and their cups and utensils slide out of their hands, you still have a problem.  Picking out the best table tools is important and can be easier than you think.  Items that increase surface texture and fill the child’s grasping hand well are easiest to hold.  Read The Not-So-Secret Solution for Your Child With Motor And Sensory Issues: Dycem and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues for some good sources.  Getting branded tableware can be appealing to young children, and even picking out their favorite color will improve their cooperation.  Finally, using these tools for food preparation can be very motivating.  Children over 18 months of age can get excited about tearing lettuce leaves and pouring cereal from a small plastic pitcher.  Be creative and have fun!

 

phil-goodwin-TxP44VIqlA8-unsplash.jpg

 

Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue?

 

vincent-van-zalinge-752646-unsplashTherapists see lots of hypermobile kids in clinics and schools.  I see hypermobile children  every week in their homes for private sessions, consultations and ongoing treatment through Early Intervention.  My estimate is that at least 25% of kids over 5 and almost 50% of the younger kids I have treated have some degree of hypermobility.  But young children are naturally more flexible than older kids, and there are other diagnoses that include hypermobility.  What would cause  a therapist to suspect a rare CTD when so many children have this one symptom?

You observe the systemic signs and symptoms that could indicate an HDCT, and you ask their parent(s) for details about their health and activities.  You will need far more information than you can get from your intake evaluation to explore the possibility of a heritable disorder of connective tissue.

Here are a few of the more common current or past indicators of a HDCT:

  • Multiple joint involvement.  Not just lax hands, but laxity at many joints, both small and large at times.
  • Skin that is either very smooth, very thin, or bruises easily, and bruises in places that are not common sites for active children.  For example, shins and dorsal forearms are commonly bruised in play.  The medial aspect of the thigh and the volar forearm, not so much.  It is not uncommon for ER staff to incorrectly suspect abuse when they see this pattern, so be aware that as a mandated reporter, you have to ask more questions before you make that call.
  • Sensory processing issues that are primarily poor proprioception, sensory seeking and perhaps poor vestibular functioning.  Children with a HDCT may have no sensory sensitivity and no modulation issues, and good multi-sensory processing.  Why good?  The more information they receive, the less the impact of poor proprioceptive input makes on performance.  With good positioning and support, their sensory issues seem to significantly disappear or are eliminated Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior.
  • Lower GI issues or incontinence issues.  These kids may have more toilet training problems and more issues with digestion than your micro-preemies at ages 4 or 5.  Girls may have a history of UTIs, and both genders can take a long time to be continent all night Teach Kids With EDS Or Low Tone: Don’t Hold It In! You may hear about slow GI motility or a lot of sensitivity to foods that are not common allergens in children.
  • Dental issues such as bleeding gums or weak enamel.  Remember, if it is a CTD, then there will be problems with many kinds of tissue, not just skin or tendons.  Read Hypermobile Child? Simple Dental Moves That Make a Real Difference in Your Child’s Health for more practical ideas.
  • Strabismus or amblyopia are more commonly seen in HDCT.
  • Really slow progress in therapy, even with great carryover and a solid team.
  • Recurrent injuries from low-impact activities that were well-tolerated the day before.   Micro-trauma can take a day to develop into pain, swelling or stiffness.  You  could see overuse trauma that doesn’t make sense at first, because the overuse is just regular levels of activity but for a CTD, this IS overuse.

Should you say something to a parent?  I don’t have a license to diagnose children, but I may contact their referring physician if I see many indications that a child needs more evaluation.  More directly, I can help parents manage the issues that fall within my practice area, and educate families about good joint protection, equipment choices, and body mechanics.

 If a child does have a HDCT diagnosis,  the current and future risks of certain sports and careers should be discussed with families.  As therapists, we know that early damage can contribute to significant impairment in decades to follow.  Just because a child isn’t experiencing severe pain now isn’t an indication of the safety of an activity.  Understanding the many ways to adapt and adjust to ensure maximal function and maximal preservation of function is embedded in every OT.  Adapt your treatment protocols to respect the nature of a CTD, such as in  Can You K-Tape Kids With Ehlers-Danlos and Other Connective Tissue Disorders?

We can make a difference for these kids and their families, but only if we know what we are really treating.

Are you a therapist looking for clinical guidance?  Visit my website tranquil babies and connect with me through a phone or video session.  With over 25 years of pediatric experience, I have probably tried all of the techniques you are considering, and treated children with the diagnoses that keep you guessing.  Make your treatment sessions more productive, and your treatment day easier, with some professional coaching today!

Are you a parent of a child with a CTD?  Or an adult with a CTD?  A coaching phone/video session may answer your questions about diagnosis and treatment, and help you craft a more successful home program.  This is not the same as a treatment session, but especially if you are getting private therapy services, you want to be an informed consumer and get targeted help from your healthcare providers.  Coaching can help you be that effective parent or patient.  Visit my website tranquil babies and get started today!

liana-mikah-665124-unsplash

The Best Ride-On Toy For Younger (or Petite) Toddlers

 

61-g+QMVAYL._SL1000_.jpgAs an occupational therapist, I have always found it difficult to recommend a toddler ride-on toy for younger or smaller kids with low muscle tone and hypermobility.  Most of these toys have such a wide seat that children must propel themselves with their knees rotated out and pushing forward on their toes.  Exactly the pattern of movement we DON’T want to see.

And then I saw the Fly Bike.  This little fold-up bike has a seat that is about 9.5 inches high and has a very narrow seat.  This allows a child’s feet to be aligned with their hips, facilitating the development of hip and trunk control, not substituting bending forward and back to propel the toy.

The textured seat helps grip a child’s clothing for a little extra stability, and the small handlebars mean children aren’t draping their chest over the front of the toy; they are holding onto the handlebars with their hands.  Brilliant.  The rubber wheels are kind to indoor floors, but can handle pavement easily.

Are there children that don’t fit this toy?  Absolutely.  If your child is too tall for this toy, they shouldn’t use it.  If your child cannot maintain adequate sitting balance independently on this toy, they may need more support from another style of ride-on toy, perhaps with a larger seat and a backplate.

I finally have a great ride-on toy that I can recommend for smaller kids.  An early Xmas present to me and my little clients!

wout-vanacker-497472

Tub Safety For Special Needs Children

Bathtime is usually a fun experience for young children.  Toys, splashing, bubbles.  But it’s not always fun for parents.  If your child has issues with sensory sensitivity, sensory seeking or hypermobility, you can feel like a one-armed paperhanger; juggling toys, washcloth and child!

One solution is to use a bath seat.  A word of common sense first:  never leave a child unattended in any type of bath seat.  Just because these devices improve stability, they don’t remove all the risks of bathing in a tub.  Young children need to be supervised at all times.  But a tub seat does help a special needs child remain sitting and stable, and that can really help parents during bathing.  Here are the positive effects of using a bath seat or tub insert:

Kids with sensory seeking or sensory sensitivity can find the expanse of the standard tub overstimulating, and in response, they may become agitated or fearful.  The youngest kids can’t tell you how this feels.  They just act up.  Using a bath seat or a tub insert can allow these children to stay in the tub long enough to be washed, and help them stay calm and relaxed.  Since bath time is usually before bedtime, that is a big plus!

For kids with instability, the bath seat or insert can prevent them from injuring themselves if they tip or lean too much.  They could even build their ability to sit up if the seat is well-chosen for their needs.  These kids need to acquire a sense of independence, and if they are given the right support, they can start to sit without an adult holding them.  They may be able to use both hands more freely, developing coordination for learning to wash themselves and confidence in their independence.

Selecting the correct equipment can be easy or challenging.  After determining what level of assistance your child needs, figure out if your child fits well in the seat you are looking at.  Some seats are made for very small children.  If your child is older or larger, keep looking until you find equipment for them.  Therapy catalogs and sites have equipment for children with significant difficulties in holding their head up or maintaining a sitting position.  These are more expensive than mass-market items, but they are often adaptable and you can remove parts as your child builds their sitting skills and safety.

Looking for more information on making your home safer for your child?  Read Should You Install a Child-Sized Potty for Your Special Needs Child? and How An Aging-In-Place Specialist Can Help You Design an Accessible Home for Your Child.  I am a CAPS as well as an OTR.  This is a natural progression, as occupational therapists are always thinking of safety and independence for their clients, all the way from infancy to end-of-life issues.

For more information about self-care and the special needs child, check out Kids With Low Muscle Tone Can Sit For Dinner: A Multi-Course StrategyImproving Daily Life Skills for Kids With Special Needs, and OXO for Kids: Great Tableware For Older Kids With Sensory and Motor Issues.

Are you toilet training your special needs child?  Do you worry that it may never happen?  I wrote the e-book for you!  The Practical Guide To Toilet Training Your Child With Low Muscle Tone is filled with readiness tips, techniques to find the best potty seat, and techniques to make learning faster and easier for both of you!  It is available on my website tranquil babies, and on Amazon and Your Therapy Source )a terrific site for parents and therapists).  Read more about this unique guide here: The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived!

 

Teaching Safety Awareness To Special Needs Toddlers

daiga-ellaby-699111-unsplash

Parents anxiously wait for their special needs infants to sit up, crawl and walk.  That last skill can take extra months or years.  Everyone, and I mean everyone, uses walking as a benchmark for maturity and independence.

They shouldn’t.  A child with poor safety awareness isn’t safer when they acquire mobility skills.  Sometimes they are much less safe.  Yes, they may be able to move without your help, but they may need to be more highly monitored and given more assistance to learn how to be safe.  They are exploring their environment and their new skills that took them a long time to develop.  They have been wanting to climb on the couch for months.  Now they can.  Getting down the “safe” way isn’t as important to them, and maybe not as easy as sliding or rolling off.  Oops.

What can parents do to help their child be a safer (notice I didn’t say “safe”) ambulator, crawler, cruiser, etc?  

  1. Talk about safety before they are independent.  Will they understand what it means?  Probably not, but your tone and your insistence on how movement is done says that you value safety and you want them to do the same.  Kids learn from all of our actions.  Make this one familiar to them by being very obvious and explicit.
  2. Take your physical therapist seriously when she or he teaches you how to work on core strength and balance skills.  Yes, I still maintain that safety is more than a sensory-motor skill, but having the best possible sensory and motor skills is important.  Having good safety awareness and safety behaviors without these skills will make a child more vulnerable to falls and injuries.
  3. The same goes for sensory processing activities.  If your child cannot perceive the movement of falling, the tactile and proprioceptive change as they crawl or step on something, or tolerate multiple sensory inputs at once, they are much less safe, even with good strength and coordination.  Really.
  4. Know your child’s cognitive and social/emotional skills.  Impulsive children are less safe overall.  Children that cannot process your instructions or recall them without you are less safe.  Children that enjoy defying you more than they want to avoid falling are less safe.  If you know any of these things, you can gauge safety and react more appropriately.  You will be less frustrated and more helpful to them.
  5. Reward safe execution and do not reward unsafe behavior.   My favorite way to avoid punishment but also to send my safety message home?  Not providing eye contact or much at all in the way of conversation as I stop unsafe actions, and either removing a child from an unsafe situation or assisting them in using the safe method to execute their move.  They get no satisfaction from seeing me react strongly, and they get the message that I am not accepting anything but their best safety skills as they move.
  6. Stop a child that is moving in an unsafe way, and see if they can recall and initiate the safe choice before assisting.  You don’t want to teach them that only you will make them safe and they need someone to be safe out there. They have to learn how to assess, react and respond, and all children can build their skills.  Some need more teaching, and some need more motivation to begin to take responsibility for their safety.  Give them both.

david-clode-635942-unsplash

 

For Kids With Hypermobility, “Listen To Your Body” Doesn’t Teach Them To Pace Themselves. Here’s What Really Helps.

 

chen-hu-664399-unsplashI ran across a comment piece online that recommended parents teach their hypermobile  children to “listen to your body” to pace activities in an effort to avoid fatigue, pain or injury.  My reaction was fairly strong and immediate.  The sensory-based effects of hypermobility (HM) reduce interoception (internal body awareness)  and proprioception/kinesthesia (position and movement sense, respectively).  These are the  main methods of “listening” we use to know how we are feeling and moving.  For children with HM, telling them to listen to their body’s messages is like telling them to put on their heavy boots and then go outside to see how cold the snow is! 

Relying primarily on felt senses when you have difficulty receiving adequate sensory feedback doesn’t make…..sense.  What often happens is that kids find themselves quickly out of energy, suddenly sore or tripping/falling due to fatigue, and they had very little indication of this approaching until they “hit a wall”.  They might not even see it as a problem.  Some kids are draped over the computer or stumbling around but tell you that they feel just fine.  And they aren’t lying. This is the nature of the beast.

I am all for therapy that helps kids develop greater sensory processing (as an OTR, I would have to be!), but expecting HM kids to intuitively develop finely tuned body awareness? That is simply unfair. Kids blame themselves all too easily when they struggle.  What begins as a well-meaning suggestion from a person with typical sensory processing can turn into just another frustrating experience for a child with HM.

What could really help kids learn to pace themselves to prevent extreme fatigue, an increase in pain and even injury due to overdoing things?

  1. Age-appropriate education regarding the effects of HM.  Very young children need to follow an adult’s instructions (“time to rest, darling!”), but giving older kids and teens a medical explanation of how HM contributes to fatigue, pain, injuries, etc. teaches them to think.   Understanding the common causes of their issues makes things less scary and empowers them.  If you aren’t sure how to explain why your child could have difficulty perceiving how hard they are working or whether they are sitting in an ergonomic position, read Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for some useful information.  You could ask your child’s OT or PT for help.  They should be able to give you specific examples of how your child responds to challenges and even a simple script to use in a discussion.  Explaining the “why” will help children understand how to anticipate and prepare for the effects of HM.
  2. Consider finding a pediatric occupational therapist to teach your child postural, movement and interoceptive awareness, adapt your child’s learning and living environments for maximal ease and endurance, and teach your child joint protection techniques.  Occupational therapists are often thought of as the people that hand out finger splints and pencil grips.  We are so much more useful to your child than that narrow view!  For example, I have adapted desks for optimal postural endurance and decreased muscle tension.  This has immediate effects on a child’s use of compensations like leaning their chin on their hand to look at a screen.  OT isn’t just for babies or handwriting!
  3. Pacing starts with identifying priorities.  If you don’t have boundless energy, attention, strength and endurance, then you have to choose where to spend your physical “currency”.  Help your child identify what is most important to them in their day, their week, and so on.  Think about what gives them satisfaction and what they both love to do and need to do.  This type of analysis is not easy for most kids.  Even college students struggle to prioritize and plan their days and weeks.  Take it slow, but make it clear that their goals are your goals.  For many children with HM, being able to set goals and identify priorities means that they will need to bank some of their energy in a day or a week so that they are in better shape for important events.  They may divide up tasks into short components, adapt activities for ease, or toss out low-level goals in favor of really meaningful experiences.  Can this be difficult or even disappointing?  Almost certainly!  The alternative is to be stuck at an event in pain, become exhausted before a job is completed, or end up doing something that places them at higher risk for injury.
  4. Help your child identify and practice using their best strategies for generating energy, building stamina and achieving pain-free movement.  Some kids with HM need to get more rest than their peers.  Others need to be mindful of diet, use relaxation techniques, wear orthotics regularly, adapt their home or school environment, or engage in a home exercise program.  Learning stress-reduction techniques can be very empowering and helps kids think through situations calmly.    Sports can be an issue or they can be a wonderful way to build endurance and body awareness.  Read  Should Your Hypermobile Child Play Sports? for some ideas on managing pain, endurance and coordination.  Creating a plan together and discussing the wins and failures models behaviors like optimism and resourcefulness.  Children depend on adults to show them that self-pacing is a process, not an endpoint.

Looking for more information to help your child with hypermobility?  Take look at The Hypermobile Hand: More Than A Strength Problem and How Hypermobility Affects Self-Image, Behavior and Activity Levels in Children.  My e-books on pediatric hypermobility are coming out soon!  Check back here at BabyBytes for updates.

liana-mikah-665124-unsplash