Pediatrics
Why Physical Therapists Are Often the First to Notice Hypermobility in Children
For many families, a physical therapist is the first professional who notices that something about a child’s movement isn’t quite typical. This isn’t because physical therapists are better than other providers—it’s because of how and where PTs spend their time with kids.
PTs Watch Children Move—A Lot
Physical therapists don’t just look at joints on an exam table. They watch children move during real activities:
Walking and running
Jumping and climbing
Sitting, standing, and playing
Transitioning between positions
Because of this, PTs often notice patterns that don’t show up in a short office visit—like joints that move too far, positions that collapse under load, or muscles that work much harder than expected to keep a child stable.
Hypermobility Shows Up in Movement, Not Just Flexibility
Many people think hypermobility is just being “extra flexible.” In children, it often shows up differently:
Knees locking back when standing
Ankles rolling easily
Elbows or fingers bending past straight
Poor endurance during play
Frequent injuries or complaints of pain
PTs are trained to notice how joints behave under stress, not just how far they move. This makes them more likely to recognize when flexibility is actually a sign of instability.
PTs See Patterns Over Time
Children often come to PT for things like:
“Clumsiness”
Delayed motor skills
Recurrent injuries
Pain without a clear cause
When PTs see these issues repeatedly—and especially when they don’t respond as expected to typical therapy—it raises important questions. A pattern of poor joint control, fatigue, and inconsistent progress can point toward an underlying connective tissue issue rather than a simple strength or coordination problem.
PTs Work Closely With Families
PT sessions are longer and more frequent than most medical visits. This gives therapists time to hear the full story:
How the child moves at home
What activities cause pain or fatigue
Family history of joint problems, injuries, or hypermobility
These conversations often provide critical clues that connect the dots between movement challenges and a broader condition like EDS.
Why This Matters
Early recognition of hypermobility or a connective tissue disorder can:
Prevent inappropriate or overly aggressive therapy
Reduce injury risk
Improve confidence and participation in activities
Guide families toward appropriate evaluation and support
When hypermobility is identified early, therapy can focus on stability, awareness, and control—rather than pushing strength or flexibility too quickly.
Patient Summary: Why a PT Might Be the First to Notice
Physical therapists spend a lot of time watching children move in real life. Because hypermobility affects how joints behave during activity, PTs are often the first to recognize patterns that suggest a connective tissue disorder. Early awareness helps children get safer, more effective care.
Common Signs Parents Often Notice First
Parents are often the first to sense that something about their child’s movement or comfort isn’t quite typical—even before there’s a diagnosis. Common early signs include:
Frequent complaints of pain, especially in the legs, feet, or back
Fatigue that seems out of proportion to activity
Clumsiness, frequent falls, or difficulty keeping up with peers
Ankles that roll easily or knees that lock backward when standing
Sitting or standing in unusual positions for comfort
Difficulty with handwriting, gripping, or fine motor tasks
Recurrent sprains, strains, or injuries from minor activities
Symptoms that don’t improve—or improve only briefly—with typical therapy
A family history of hypermobility, joint problems, or chronic pain
Individually, these signs may not seem concerning. When several appear together or persist over time, they can point toward underlying joint instability or a connective tissue difference worth exploring.
Presentation in the Pediatric Patient
How Ehlers-Danlos Syndrome Can Show Up in Children
Ehlers-Danlos syndrome (EDS) often looks different in children than it does in adults. Symptoms may be subtle at first, come and go, or be explained away as “normal childhood issues.” Because children are still growing and adapting, their bodies often compensate well—until they can’t anymore.
Many children with EDS don’t present with one clear problem. Instead, parents often notice a pattern of physical, developmental, and systemic concerns that don’t quite fit together at first [Castori 2017; Engelbert 2017].
Age Based Symptom progression
0-5 years (infancy/early childhood): motor delays, constipation, oral motor fatigue
5-9 years (gradeschool): joint pain, difficulty with handwriting/handwriting fatigue, clumsiness, anxiety
9-12 years (late childhood): GI issues, fatigue, sleep disturbances, lightheadedness, dizziness
12-18 years (adolescence): difficulty with preferred activity, school avoidance, recurrent subluxations, headaches, POTS, pain centralization
Pain
Pain is common in children with EDS, even when adults are told they are “too young” to hurt this much.
Children may experience:
Daily or frequent pain complaints
“Growing pains” that persist, worsen, or don’t follow typical patterns
Pain after routine activity or sports
Joint pain associated with subluxations or repeated minor injuries
Pain in pediatric EDS is often real and biologically driven, even when imaging and testing appear normal [Castori 2012; Engelbert 2017].
Movement, Coordination, and Function
Many early signs of EDS relate to how a child moves and controls their body.
Common features include:
Delayed motor milestones (late sitting, standing, walking, or skipping crawling)
Low muscle tone (hypotonia)
Clumsiness, frequent falls, or poor coordination
Difficulty sitting upright without slouching or leaning
Always seeking supportive surfaces (leaning, sitting with legs wrapped, lying down)
Difficulty with handwriting or fine motor tasks
Nursemaid’s elbow, frequent sprains, or joint instability
Hip dysplasia or early joint alignment issues
These challenges are often related to poor proprioception and joint instability rather than laziness or lack of effort [Rombaut 2015; Scheper 2016; Engelbert 2017].
Fatigue and Exercise Intolerance
Fatigue in pediatric EDS is often profound and out of proportion to activity.
Parents may notice:
Debilitating fatigue after school or sports
Poor exercise tolerance
Needing excessive rest compared to peers
Post-exertional symptom flares (pain, fatigue, brain fog after activity)
Fatigue reflects the increased energy cost of stabilizing joints and regulating the nervous system, not poor conditioning [Eccles 2012; Engelbert 2017].
Gastrointestinal (GI) Symptoms
GI symptoms are very common and may appear early in childhood.
These may include:
Constipation and/or diarrhea
Abdominal pain or bloating
Nausea
Feeding difficulties or “fussy eating”
Food intolerances or sensitivities
Slow motility or reflux
GI involvement is linked to connective tissue differences and autonomic dysfunction, not simply diet or behavior [Castori 2017; Tinkle 2017].
Cardiovascular and Autonomic Symptoms
Some children with EDS show signs of dysautonomia early.
These can include:
Dizziness or lightheadedness
Orthostatic intolerance (symptoms when standing)
Rapid heart rate (tachycardia)
Low blood pressure
Exercise intolerance
These symptoms may worsen during growth spurts or illness [Eccles 2012].
Skin and Wound Healing
Skin findings may be subtle but meaningful.
Parents may notice:
Easy bruising
Skin that stretches more than expected
Poor wound healing
Fragile skin or frequent skin tears
These signs reflect underlying connective tissue differences, not clumsiness or carelessness [Malfait 2017].
Headaches and Neurologic Symptoms
Neurologic complaints are common in pediatric EDS.
These may include:
Chronic or frequent headaches or migraines
Brain fog or difficulty concentrating
ADHD-like symptoms
Sensory sensitivities
Sleep apnea or disrupted sleep
Headaches and cognitive symptoms may be related to joint instability, autonomic dysfunction, or nervous system sensitization [Castori 2017; Eccles 2012].
Psychological and Social Impact
Living in an unpredictable body affects children emotionally as well as physically.
Common experiences include:
Anxiety (especially separation anxiety or fear of injury)
Kinesiophobia (fear of movement due to pain or injury)
Social withdrawal or isolation
Frustration or sadness related to activity limitations
Feeling dismissed or not believed
These responses are understandable reactions to chronic symptoms, not character flaws [Bulbena 2017; Clauw 2014].
Why These Symptoms Matter
In children, EDS is often missed because each symptom is treated in isolation. When viewed together, these patterns can point toward a connective tissue disorder and guide safer, more effective care.
Early recognition allows physical therapy and medical care to focus on support, stability, pacing, and confidence, rather than pushing a child beyond what their body can safely tolerate [Engelbert 2017; Tinkle 2017].
Parent Summary: Signs in Children
Children with EDS may be clumsy, tired, anxious, or in pain—not because they are weak or unmotivated, but because their bodies work harder to stay stable. Symptoms often involve many systems at once. Recognizing these patterns early helps children get care that protects their joints, supports development, and builds confidence instead of fear.
Exercise in the pediatric patient
Children with Ehlers-Danlos syndrome (EDS) often move differently from an early age. Many are identified because they miss motor milestones, seem unusually clumsy, tire quickly, or avoid physical play. These differences are not behavioral and not due to poor effort—they reflect how connective tissue, muscles, and the nervous system work together in EDS.
The goal of physical therapy in childhood is not to push strength or endurance, but to help children feel safe, supported, and organized in their bodies so movement becomes easier and more confident over time.
Why Early Identification and Early Intervention Matter
EDS is often first noticed in childhood through:
Delayed motor milestones (skipping crawling, late walking)
Frequent falls or injuries
Poor coordination or clumsiness
Fatigue with play
Difficulty sitting upright or maintaining posture
Early physical therapy can:
Improve body awareness and coordination
Reduce injury risk
Support motor development
Prevent fear of movement from developing
Help children participate more fully in play, school, and daily life
Children who receive support early often avoid the cycle many older patients experience: clumsiness → injury → fear → withdrawal from movement.
How Exercise Looks Different for Children With EDS
1. Stability and Body Awareness Come First
Many children with EDS have difficulty sensing where their joints are in space. Therapy focuses on:
Finding supported, comfortable positions
Moving slowly enough for the brain to process movement
Learning what “center” feels like
This often looks like floor play, supported reaching, gentle balance games, and controlled transitions—not traditional exercises.
2. Core and Trunk Support Through Play
Core strengthening is essential, but it doesn’t look like sit-ups or planks. Instead, it may include:
Sitting and reaching games
Crawling or modified crawling
Rolling, scooting, or supported kneeling
These activities build trunk stability in ways that feel natural and age-appropriate.
3. Swimming and Water-Based Movement
Swimming and aquatic therapy are often excellent for children with EDS. Water:
Supports joints
Reduces impact
Allows movement without gravity pulling joints out of alignment
Many children feel more coordinated, confident, and less fatigued in the pool than on land.
Compression Clothing and External Support
Compression garments can be extremely helpful for some children. They provide gentle, constant feedback to the nervous system, which can:
Improve body awareness
Reduce clumsiness
Decrease fatigue
Help children feel more “held together”
Compression is not a weakness—it’s a tool that replaces some of the passive support connective tissue does not provide.
The Role of Occupational Therapy
Occupational therapy (OT) is often just as important as physical therapy for children with EDS. OT can help with:
Handwriting and fine motor skills
Fatigue during school tasks
Joint protection for hands and wrists
Adaptive tools for school and daily activities
For children who are neurodivergent, OT can also:
Address sensory sensitivities
Support regulation and attention
Integrate movement with sensory processing
Reduce overwhelm during learning and play
Sensory Differences and Neurodivergence
Many children with EDS are also neurodivergent. Sensory sensitivities, movement avoidance, or difficulty with transitions are often related to nervous system processing—not defiance or lack of motivation.
Therapy that respects sensory needs and moves at the child’s pace is far more effective than approaches that push through discomfort.
How Activity Is Structured
Children with EDS typically do best with:
Short activity bursts
Frequent rest breaks
Variety rather than repetition
Consistency matters more than intensity. The goal is participation without exhaustion.
What to avoid
Children with EDS usually struggle with:
End-range stretching
Locking joints (knees, elbows, fingers)
High-impact or repetitive jumping
Fast, uncontrolled movements
Avoiding these early helps protect joints and build trust in movement.
How Progress Is Measured
Progress for children with EDS is not about athletic performance. It’s about:
Feeling more coordinated
Getting hurt less often
Participating more comfortably in play and school
Needing less effort to move
Some days will be easier than others. A good therapy plan adapts to the child’s energy, attention, and sensory needs on that day.
Parent Summary: Supporting Movement in Children With EDS
Children with EDS aren’t weak or unmotivated—they need more support to feel stable and coordinated. Early intervention, gentle play-based exercise, swimming, compression clothing, and occupational therapy can make a meaningful difference. When movement feels safe and supported, confidence, strength, and participation grow naturally.
School Support for Pediatric Patients
Children with EDS often work much harder than they appear to just get through the school day. The goal of school-based support is safety, access, pacing, and participation—not avoidance. The following supports can make a meaningful difference.
Support in the Nurse’s Office
The nurse’s office is often a key safety and regulation space for students with EDS.
Joint safety & positioning
Handle joints carefully; be mindful of subluxation risk
Avoid forceful movements or quick repositioning
Allow the student to change positions freely
Autonomic support (POTS/dysautonomia)
Monitor for low blood pressure and high heart rate
Allow the student to lie down and elevate legs when needed
Symptoms may not be pain-free—and that’s okay
Symptom regulation
Encourage hydration, ideally with electrolytes
Allow snacks to help stabilize blood sugar
Offer heat or ice if helpful for pain or muscle tension
Pacing and flare management
Encourage self-regulation and rest without penalty
Work with the student and family to create a flare plan
Understand that early intervention can prevent worsening symptoms
Physical Education (PE) and Recess Considerations
Movement is important for kids with EDS—but how they move matters.
Activity modifications
Limit or avoid contact sports
Avoid heavy pushing, pulling, or hanging activities
Reduce repetitive movements that irritate joints
Avoid aggressive or end-range stretching
Safer movement strategies
Coach the child to stay in mid-range, not end range
Emphasize control over speed or force
Core-focused activities are often helpful
Compression garments may improve body awareness and stability
Footwear & support
Shoe wear matters—supportive shoes are important for weight-bearing activities
Orthotics or braces should be allowed if prescribed
Pacing, Participation, and Trust
Children with EDS are often excellent reporters of their own bodies.
Encourage pacing
Frequency of movement matters more than intensity
Allow breaks without drawing attention or penalty
Trust the student when they say they need to stop
Preventing boom–bust cycles
Students are often working hard to avoid post-exertional symptom flares (PEM)
Encourage steady participation rather than all-or-nothing effort
Cardiovascular activity
Cardio is important—but should be introduced low and slow
Build tolerance gradually and consistently
Pain and regulation skills
Help the student learn the difference between “helpful” discomfort and harmful pain
Encourage relaxation strategies during pain flares
Allow hydration before, during, and after activity
Key Takeaway for Schools
“Students with EDS are not trying to avoid activity—they are trying to participate safely and sustainably. With flexibility, trust, and simple accommodations, most children with EDS can stay engaged in school while protecting their health.”
Pediatric Diagnosis of Hypermobility-Related Conditions
Diagnosing hypermobility-related conditions in children requires a different approach than in adults. Children are naturally more flexible, and many of the features used to diagnose hypermobile EDS (hEDS) in adults develop gradually over time. For this reason, the 2017 adult hEDS criteria should not be applied to children until they have reached “skeletal maturity” which is defined as growing less than 1” per year.
Why Pediatric Diagnosis Is Different
In childhood and early adolescence:
Joint hypermobility is common in the general population
Skin, scarring, pain patterns, and systemic features may not yet be fully expressed
Many associated conditions (fatigue, GI symptoms, autonomic symptoms) overlap with common pediatric complaints
Because of this, labeling a child with hEDS too early can be inaccurate and potentially unhelpful. Instead, experts recommend a developmentally appropriate, flexible diagnostic framework that can evolve as the child grows.
The Pediatric Hypermobility Diagnostic Framework (2023)
An international pediatric working group published an updated framework in 2023 to guide diagnosis in children and adolescents who have not yet reached skeletal maturity. This framework evaluates four key areas :
Generalized Joint Hypermobility (GJH)
Defined as a Beighton score ≥ 6/9 in children
Assessment is recommended starting at age 5
Skin and Soft Tissue Features
Examples include unusually soft skin, mild skin stretchiness, abnormal scarring, stretch marks, piezogenic papules, or recurrent hernias
Musculoskeletal Complications
Activity-related joint pain
Recurrent sprains, subluxations, or dislocations
Soft tissue injuries
Core Comorbidities
Chronic pain
Fatigue
Functional GI and/or bladder disorders
Dysautonomia (including POTS)
Anxiety
Based on which features are present, children are categorized into pediatric generalized joint hypermobility (pGJH) or pediatric hypermobility spectrum disorder (pgHSD) subtypes. These categories are not permanent and are meant to change over time as symptoms improve, resolve, or evolve.
No hEDS diagnosis for pediatrics - only GJH or HSD (8 categories)
Child can change subtype as symptoms and joint mobility change
Minimum age assessed for GJH or HSD: 5 y/o
When Is hEDS Diagnosed in Children?
A formal diagnosis of hypermobile EDS (hEDS) is generally reserved for biologically mature adolescents who meet the full 2017 criteria. Biological maturity is defined by skeletal maturity and slowed growth, not just age .
Until then, the pediatric framework allows clinicians to:
Validate symptoms
Guide appropriate treatment (including physical therapy)
Avoid over-medicalization
Reassess over time as the clinical picture becomes clearer
Who Can Make the Diagnosis?
Any qualified medical provider (such as a pediatrician, rheumatologist, geneticist, or other specialist) can use this framework if they are comfortable with joint hypermobility assessment and the worksheet. Genetic testing is not routinely recommended for all hypermobile children and is guided by clinical judgment and red flags for other connective tissue disorders .
Patient Summary: Pediatric Diagnosis
“When I was a child, my body was still changing, so doctors used a different framework than the adult EDS criteria. Instead of giving me a lifelong label too early, they looked at my flexibility, pain, skin, and other symptoms together—and understood that my diagnosis could change as I grew. This approach helped guide treatment while leaving room for my body to mature.”