My posts on proprioception and hypermobility have been popular lately, leading me to think that parents (and therapists) want more information on the sensory basis for their children’s struggles, and that often treatment doesn’t include addressing sensory issues. Ehles-Danlos Syndrome is a somewhat rare connective tissue disorder that can create generalized joint hypermobility. These kids are often diagnosed as having coordination disorder, and their families describe them as “clumsy”. I see them as having sensory processing issues as well as neuromuscular and orthopedic issues. Take a look at Hypermobility and ADHD? Take Stability, Proprioception, Pain and Fatigue Into Account Before Labeling Behavior and Hypermobility and Proprioception: Why Loose Joints Create Sensory Processing Problems for Children for more on this subject.
There are some caveats in using techniques from sensory integration protocols with this population. This doesn’t mean “no”; it means think about it first. The use of the Wilbarger Protocol is one that requires some thought before initiating with EDS kids.
The Wilbarger Protocol:
For those of you who are unfamiliar with the Wilbarger Protocol, it is a common treatment approach for children with sensory sensitivity, sensory discrimination issues and poor sensory modulation. Created by Patricia Wilbarger, a terrifically talented OTR who directly trained me as a young therapist, it is a neurologically-informed treatment that can be used quickly for both immediate improvement in sensory processing and long-term alteration in the brain’s ability to use sensory input in movement and state control. It involves skin brushing and joint compression in a carefully administered method that uses gate theory to assist the nervous system in regulating awareness and arousal.
There have been other protocols for regulation developed over the years, and adaptations to the Wilbarger Protocol have occurred since it’s creation. But daily and repeated use of brushing the skin and use of joint compression to deliver deep pressure input (to inhibit light touch registration and enhance proprioceptive discrimination) are the cornerstones of treatment delivery.
Adapting the Protocol for Ehlers-Danlos Syndrome
Since the Wilbarger Protocol was not created to treat EDS, I am recommending that therapists and parents consider adapting it to protect the joints and skin while still gaining benefit from this technique:
- Reconsider using the brush. Although the dual-treatment of brushing and joint compression makes this technique a powerful approach, kids with EDS often have skin that is more fragile than average. It can bruise and tear more easily, especially with the vascular or classic EDS subtypes. Small children will be brushed repeatedly over the same skin area, increasing the risk of shear, abrasion and bruising. Children (and adults) with EDS will have skin reactions far in excess of the amount of pressure applied. This is related to the assumption that the connective tissue that makes up skin and blood vessels is either weaker or thinner than typical children. Go with the joint compression component alone, and see if you get a clinically valid result without the risk of skin damage.
- Make sure that you are well-trained in the positioning and administration of joint compression. I have taken joint mobilization training courses, as well as having a licenses in massage therapy and occupational therapy. Being able to feel joint position and alignment is absolutely key when children have loose joints, so use this technique with care. Avoid painful joints, and limit repetition to the shortest amount needed to see a clinically meaningful response.
- Train parents extremely well before recommending home use. Most parents can learn this technique with the right explanation and some practice. If a parent seems unable to perform joint compression correctly, reconsider a home program. This has only happened once in my career. A mom was unable to perceive the amount of force she was using. She admitted that this had been an issue for her since childhood. We moved on to other treatment choices.
The true skill of a therapist is the ability to offer the just-right challenge to each child, based on a therapist’s observations, assessment and knowledge base. I believe that there are many kids with EDS that could benefit from the Wilbarger Protocol when it is effectively adapted to their needs.