Tough Love for Kids with JHS
Engaging the patient is equally important when working with hypermobile children, noted Susan M. Maillard, MSc, a clinical specialist physiotherapist in pediatric rheumatology at Great Ormond Street Children’s Hospital in London. “Our philosophy at Great Ormond Street Hospital is to increase children’s function despite their pain,” she said. To overcome children’s resistance to exercise, they’re told by the treatment team: “You’re double-jointed, so you need double the muscle strength to protect your joints.”
Children with hypermobility syndrome share common complaints at presentation, such as muscle weakness—particularly of the hip abductors and hip extensors—poor central stability, and poor grip. Underscoring Dr. Grahame’s contention about the under-recognition of the syndrome’s complex features, Maillard added that over 40% of the children also report trouble sleeping; 55% are fidgety, resulting in problems at school; and 41% report problems with constipation.
Maillard and her colleagues have initiated both an intensive two-week rehabilitation program and a 12-week outpatient program at their clinic. Both have shown impressive results in increasing muscle strength, decreasing reports of pain, and improved school attendance for those who completed the training programs. She outlined the guiding principles of the holistic approach in designing programs to retrain children’s muscles: Exercises must be prescribed; they must be progressive (at least 15 repetitions are needed for an exercise to work, but 30 repetitions are most effective); weights are useful to add resistance and increase strength; and the program must be easy to do at home, requiring as little equipment as possible.
For children with flat feet, orthotics to maintain the arch can be useful and lace-up boots can provide much-needed foot and ankle stability. Lastly, said Maillard, once children’s muscle strength improves, it’s advisable to encourage participation in normal physical activities, including sports. “Basically, we are trying to help children with hypermobility to be as strong and as fit as possible,” Maillard remarked. “We recognize that the muscles are the dynamic control of the joints and we want these muscles to control the hypermobile range as well. And we think that children can strengthen beyond levels that we thought possible.”
Echoing her colleagues, she concluded with a message that applies to both adult and pediatric patients with hypermobility syndrome: “We, as therapists and clinicians, should help families and children to manage their own home programs. We are there to provide the tools, but not necessarily do it for them.”