Hi all

Just wondering how colleagues find supporting children with hypermobility and specifically Ehlers Danlos?

I have some unusual cases where there are differing opinions about how to manage this condition. Even between health professionals there seems to be different schools of thought. For example recently,  I have had a 6 year old girl referred to me by school where parents and school report the child has chronic pain and fatigue - this is quite visible and she is sleeping at school most lunchtimes and taking daily pain meds prescribed by the Paed. She is diagnosed with EDS and has associated gastro and autoimmune disorders.  I suggested she have an ergonomic chair like the Vela Tango which may help reduce fatigue and help her be more comfortable for working but the OT is adamant that she shouldn't have/doesn't need a different chair as the management of the condition requires people to remain as active as possible. I don't think correct seating would contradict this, it would more enable her to have the energy she needs for more active times of the day and a good position for learning. The school are finding alternative (unsuitable chairs) themselves anyway as they report her splints catch on the school chairs every time she gets up. The OT has also said that she shouldn't have one as this would make her look different and they don't want to send the child the wrong message!? This is not the ethos I think we should be promoting and the child's parents feel strongly that their daughter already feels different and knows she is different in some ways to her peers , they want her to understand and be accepting of this rather than feel she needs to hide it.

Has anyone had a similar case or have any views/ pearls of wisdom about this?

Thank you

Lucy