When does hypermobility / hypotonia become EDS?

[4oclockwakeup]

I am after some clarity on how Ehlers Danlos syndrome is diagnosed.

My DD is 4 and has been diagnosed with hypermobility and hypotonia for a couple of years now. She also has a heart murmur and now it looks like she is developing some eye problems (her eyes have gone crossed/wandering/poor focus) it may be she needs glasses but waiting for they eye doc to see her - so naturally I was wondering if this too is part of a bigger picture.

Anyway my question really is what is the difference between 'just' having hypermobility and low muscle tone and having EDS. How is EDS diagnosed and by what kind of doctor?

Have you tried posting in children's health or chat? You might get a few more responses.

I would be interested in any responses to your question here. I have a niece diagnosed with EDS hypermobility but I think the diagnosis used clinicial markers as I'm not sure if there is a 'test' as such, more a combination of symptoms. If you move the thread elsewhere and get more responses 4oclockwakeup please let me know.

Book privately to see Professor Grahame at St John and St Elizabeth, he will give you a report and tell your GP where to refer you.

There is a massive thread about Hypermobility/EDS on the special needs children board. It was active earlier so shouldnt be too far down the page good question though.

as I understand it, hypermobility becomes EDS if it causes problems. Do DD3 is very bendy, but "just" hypermobile, DD1 is bendy and has joint pain so has Joint Hypermobility Syndrome (EDS in all but name), DD2 is bendy and has a related condition, so has EDS.

The diagnostic criteria are Brighton scale and Beighton scale. But, you cna have problems and be hypermobile in different joints, so those criteria are just a starting point.

Come and talk to us over here, as there are several poster with younger DC who will be able to advise you better.

as I understand it, hypermobility becomes EDS if it causes problems. Do DD3 is very bendy, but "just" hypermobile, DD1 is bendy and has joint pain so has Joint Hypermobility Syndrome (EDS in all but name), DD2 is bendy and has a related condition, so has EDS.

The diagnostic criteria are Brighton scale and Beighton scale. But, you cna have problems and be hypermobile in different joints, so those criteria are just a starting point.

Come and talk to us over here, as there are several poster with younger DC who will be able to advise you better.

sorry for double post, MN went weird on me .

thanks all and i will try the other thread