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DS diagnosed with EDS III - what now?

(2 Posts)
iwearflairs Tue 23-May-06 16:17:21

Found out yesterday from geneticist that DS has Hypermobility Ehlers Danlos Syndrome and it is nice in a wierd way to have a label.

Should I be trying to get him to a specialist in this kind of rheumatology or is it redundant now that we have a dx? As some of you know I am less than thrilled with the physio/orthotic treatment so far - perhaps a specialist might put me in touch with people who have more experience in this area? Or am I making unnecessary waves?

iwearflairs Tue 23-May-06 16:24:38

Forgot to mention - to those of you who saw my last post - splints came back today and they are still not right - physio is acting as though I am a nuisance for adding to her workload, but what does she expect?

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