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. Some of them are almost certainly going to be diagnosed in the future with hypermobile Ehlers-Danlos syndrome (hEDS).
There are always a few children that have been given the BJHS diagnosis without any identified genetic disorder. 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.
Looking for more information on raising a hypermobile child?
I wrote two e-books for you!
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years and Volume Two: The School Years are my newest e-books. Volume One explains how to navigate all the self-care challenges such as selecting high chairs, booster seats, clothes and even how to make your home safer while allowing your child more independence. Parents become empowered, not overwhelmed.
Volume Two goes deep into school skills like handwriting and mobility in school, and into the skills needed to succeed in sports, music lessons, and also how to build more solid relationships within and outside the family . Both books build a parent’s ability to communicate with teachers, therapists, their larger family, and even doctors! Read more about it here: The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!
These unique books are available as a read-only downloads on Amazon or as click-through and printable downloads at Your Therapy Source. YTS is also bundling both e-books together for a great deal, or bundling Volume One together with The Practical Guide to Toilet Training Your Child With Low Muscle Tone. Parents and therapists alike will learn how to manage hypermobility with ease and confidence!
