Monthly Archives: January 2019

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!

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Raising a Gifted Child? Read “A Parent’s Guide to Gifted Children” For Successful Strategies To Navigate the Waters

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Raising a gifted child isn’t all rainbows and first place ribbons.  Especially in the early years, the intensity, drive and complexity that gifted children bring to the table can come out looking like bossiness, perfectionism and extreme sensitivity  How To Spot A Gifted Child In Your Preschool Class (Or Your Living Room!).  Many books try to explain why gifted individuals are challenging, but this book is unique. It is offering parents clear strategies to help their child thrive and help them navigate school and social activities with confidence.

A Parent’s Guide to Gifted Children is written by four leaders in gifted education and research.  James Webb, PhD, was a strong supported of the gifted community and gifted children in particular.  The other authors; Janet Gore M.Ed., Edward Amend Psy.D and Arlene DeVries M.S.E., are all specialists in this area.  They offer useful information about both the benefits of giftedness and the challenges in every chapter.

This book is unique in many ways.  It offers solid parenting advice, not theories and research studies.  Gifted children are still children who require support, limits, education and love.   The authors are eager to give parents tools to make life at home and school easier.  Gifted kids can be misunderstood, teased or excluded. Dealing with this is not easy for any parent.  They even acknowledge that parents themselves may be criticized or mocked for advocating for their child’s needs.  The chapter on what to do if your child is twice-exceptional (for example, having a learning disability in addition to giftedness) address getting help for both skills and areas of challenge.  It also helps parents consider whether their child’s diagnosis is accurate.  Many characteristics of giftedness can be seen incorrectly as ADHD, bipolar illness or ASD.  Getting the right diagnosis is essential to maximizing your child’s abilities and happiness.

One aspect of giftedness that is rarely addressed in this much detail but is solidly reviewed here is the emotional sensitivity often seen at an early age.  This book spends considerable space on helping parents teach their gifted children how to handle frustration, perfectionism, and even existential depression.  What is that?  A child that can comprehend the level of danger and inequality in the world at a young age may not have the emotional ability to come to terms with this knowledge.  The authors do a terrific job of explaining the sources of  a gifted child’s pain and offer concrete advice to parents.

There is so much to say about the joys and the pitfalls of parenting gifted children of any age.  This book does an excellent job of helping families (and educators) see the road ahead and handle it well.

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How To Stop Your Toddler From Hitting You

 

patrick-fore-557736When your sweet little baby turns into a toddler that smacks you, you may be so shocked that you don’t know how to react.  The second time you get hit, or pinched, or even bitten in anger, you might feel a level of rage come up that is both surprising and horrifying.  Well, I am not going to shame you for any of that.  I want to help you get this under control and help your child handle what is (probably) a normal level of aggression.

Yes, this is likely a normal response for toddlers.  They have really limited language, hardly any understanding of their own feelings, and they live in the moment.  You probably have one of the 85% of kids who are not placidly calm most of the time.  If you have a very young child with a strongly spirited temperament (15-20% of the population) then you probably see this behavior at least a few times a week, if not daily.  It’s still normal. And you have to deal with it or you will have a bigger, stronger, and more aggressive child next year.

Here are my suggestions to deal with aggression:

  1. You are going to have to use Dr. Karp’s Fast Food Rule.  The first simple step is to state what you think your child is thinking, such as ” You say “No go inside”, in as short and simple a phrase as you can, based on age and level of emotion.  The younger and more angry your child is, the simpler the message.  Match your expression and gestures to the emotion you are stating.
  2. Wait for a shift in body language or level of screaming.  Repeat the phrase if needed, may be more than once.  Then state “No (biting, hitting, throwing)” and you say  “I don’t like it” or a “We don’t hit” if your child isn’t totally out of control.  If they are out of control, you have to wait until they can hear you.
  3. You must make it clear that YOU don’t like this behavior, not simply that it isn’t “nice”.  Why?  Because a personal message is more powerful to a toddler than stating that they broke the rules.  I even throw in “That scared me and I don’t like it” to slightly older toddlers, to come down to their level.  They might be a little surprised, but they know all about being scared.  You aren’t admitting weakness, you are telling them how they crossed a line.  As long as you are using body language that tells them you are still the adult in control, this helps them understand the seriousness of what they did.  But the 12-18 month olds don’t get that, so wait until they are older to add that one in.
  4. If you were holding your child when this happened, put him down. Nothing says confuse me like saying these phrases while cuddling.  If you were sitting next to them, move away a bit.  The message is that they have crossed a line, because they have.  They may cry about this, but that is OK.  For now.  Once they shift out of aggression, you can be more welcoming.  Get it?  Good behavior we welcome, aggression we do not.  Simple.
  5. If you see the clouds building and you can anticipate your child will hit, bit, kick or throw, you are allowed to intervene.  Pull your arm away, put them down, reach for the toy you think she will throw, or move away.  You could say “I don’t want you to kick” and then offer a solution.  This solution could be what you think your child needs, like a nap or a snack, or it could be something amusing, like looking in your purse for your keys.  Young toddlers can switch things easily.  Older toddlers sometimes commit to aggression and they won’t take the bait.  But sometimes they will.
  6. Don’t be afraid to issue consequences.  I don’t believe in physical punishment, but I have no problem with removing toys that got thrown or issuing kind time-outs.  Losing the opportunity to go do something fun because you tossed your boots at my head is just fine for me.  I never reward bad behavior.  Ever.  I have too much to lose if a child thinks that aggression will work to avoid something or receive something.  Kids can hurt themselves in the process of being aggressive, and that is always going to be my fault.  Not a chance.
  7. I always give children a chance to come back into the fold.  Maybe not to get the same thing they were being aggressive about, but a new fun thing.  You have to wait until they are calm to do this.  This isn’t coddling.  This is teaching them how I want them to behave, and that there is always a chance to do things better.

Is Your Hypermobile Child Frequently In An Awkward Position? No, She Really DOESN’T Feel Any Pain From Sitting That Way

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I don’t have a good photo to illustrate this point, but if you or your child are hypermobile, you know exactly what I am talking about.  It can be any part of the body; shoulders that allow an arm to fold under the body and the child lies on top of the arm, crawling on the backs of the hands instead of the palms, standing on the sides of the feet, not the soles.

The mom of a child I currently treat told me that this topic is frequently appearing on her online parent’s group.  Mostly innocent questions of “Does your child do this too?”  and responses like “At least she is finally moving on her own”  When I met her child, she was rolling her head backward to such a degree that it was clearly a risk to her cervical (neck) spine.  We gradually decreased, and have almost eliminated, this behavior.  This child is now using it to get attention when she is frustrated, not to explore movement or propel herself around the room.

Because of their extreme flexibility and the additional gradual stretching effects of these positions, most children will not register or report pain in these positions.  Those of us with typical levels of flexibility can’t quite imagine that they aren’t in pain.  Unfortunately, because of their decreased proprioception Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children and decreased sense of stability, many hypermobile kids will intentionally get into these awkward postures as they seek more sensory input.  It can actually feel good to them to feel something!

The fact that your child isn’t in pain at the moment doesn’t mean that there isn’t damage occurring as you watch them contort their bodies, but the underlying inflammation and injury may only be perceived later, and sometimes not for years.  Possibly not until tissue is seriously damaged, or a joint structure is injured.  Nobody wants that to happen. Read   Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.  If you think that there is a chance that your child is more than just loose-limbed, ask your therapist to read Could Your Pediatric Therapy Patient Have a Heritable Disorder of Connective Tissue? and get their opinion on whether to pursue more evaluations.  Some causes of hypermobility have effects on other parts of the body.  An informed parent is the best defense.

Here is what you can do about all those awkward postures:

  • Discuss this behavior with your OT or PT, or with both of them.  If they haven’t seen a particular behavior, take a photo or video on your phone.
  • Your professional team should be able to explain the risks, and help you come up with a plan.  For the child I mentioned above, we placed her on a cushion in a position where she could not initiate this extreme cervical hyperextension.  Then we used Dr. Harvey Karp’s “kind ignoring” strategy.  We turned away from her for a few seconds, and as soon as she stopped fussing, we offered a smile and a fun activity.  After a few tries, she got the message and the fussing was only seconds.  And it happens very infrequently now, not multiple times per day.
  • Inform everyone that cares for your child about your plan to respond to these behaviors, to ensure consistency.  Even nonverbal children learn routines and read body language.  Just one adult who ignores the behavior will make getting rid of a behavior much, much harder.
  • Find out as much as you can about safe positioning and movement.  Your therapists are experts in this area.  Their ideas may not be complicated, and they will have practical suggestions for you.  I will admit that not all therapists will approach you on this subject.  You may have to initiate this discussion and request their help.  There are posts on this blog that could help you start a conversation.  Read Three Ways To Reduce W-Sitting (And Why It Matters) and Kids With Low Muscle Tone: The Hidden Problems With Strollers  and How To Reposition Your Child’s Legs When They “W-Sit”.  Educate yourself so that you know how to respond when your child develops a new movement pattern that creates a new risk.  Kids are creative, but proactive parents can respond effectively!!joshua-coleman-655076-unsplash