AFOs, Compression Clothing, and Bracing

We often said Evan could trip over his own shadow due to the lack of stability that led to numerous injuries. His neurologist put it plainly: while most bodies have sufficient internal support, hypermobile ones do not. The fix? External support through orthotics, compression clothing, bracing, and taping.

Evan was already using ankle-foot orthotics, but we faced pushback from many doctors and therapists concerned they'd weaken his muscles. Dr. Pradeep Chopra, in "Understanding EDS and Managing It," clarifies that braces actually aid muscle movement by stabilizing joints. This has been our experience too: orthotics are Evan’s best tool for stability, allowing him to run and play safely. He is significantly more active when he wears them and for longer periods of time. Different types of orthotics or high-top runners may work better for other hypermobile children.

Initially, we hadn’t explored options beyond AFOs for body support, it never crossed my mind but the comparison from the neurologist made sense to me. She specifically recommended compression garments for Evan’s hips and shoulders (shorts and shirts). Finding suitable options for young children proved challenging, with the market lacking due to low demand. But when we did find and use them, they significantly extended Evan's playtime and comfort

We encountered similar challenges finding small sized braces for specific areas like the thumbs due to the scarcity of child sizes. We had some success with special requests at pharmacies and juvenile arthritis resources. Taping offered flexibility and seemed extremely promising until Evan had allergic reactions, a fairly common issue for those with EDS. Even the skin sensitive ones created massive rashes. However, for others without adhesive allergies or sensitivities, it’s worth trying.

Navigating hypermobility and chronic pain has been a continuous learning process. Despite the challenges in finding suitable support tools for children, when we have found them, they have made a huge difference for his mobility and overall quality of life.

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Previously, we relied on 2XU for compression garments, though they've since discontinued their kids' line. You may find some items second-hand or in limited stock, depending on your location. Under Armour now offers compression wear suitable for children size 7 and older. For bracing needs, like knee and wrist supports, IMAK and Champion Kidsline, provide options. Additionally, Dyck's Pharmacy offers a wide selection of children's braces and mobility aids, with some available for quick special order.