Therapists 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 everything you can from your providers. Coaching can help you be that effective parent or patient. Visit my website tranquil babies and get started today!