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First appointment

(4 Posts)
shouldwestayorshouldwego Tue 07-Nov-17 06:21:40

Just wondering how to approach a first appointment with the paediatricians. It is for dd. From Dr Google I am fairly sure that I know the likely diagnosis (EDS hypermobility) - meets I think enough criteria and I am still somewhat hypermobile plus bringing ds (as at end of school day) who is very bendy so will tick the hypermobile FDR. There are a number of other conditions which are associated with it too, which she also has although no NHS diagnosis (e.g. visual stress, spd) in addition to the core diagnostic features. I think that it might be easier for school if we say she has x which explains a, b and c. Will it be muddying the waters to discuss the associated conditions or should we stick to the core diagnostic features?

Should I go in saying that I think it is EDS based on Dr Google my 'research' or should I wait to see if it is pulled out of the hat? Or I could say that I was told my similar issues were probably 'just hypermobility' so I guess hers are too. It seems much more defined now.

Our key concern is the pain and accidents. Should I also bring in all the school issues (handwriting etc)? Should I ask about the other referrals which I think would be useful? It is to a general clinic not a specialist service because GP also wants other possible causes rulled out. Basically how passive/ active/ knowledgeable should I be?

HardAsSnails Tue 07-Nov-17 07:33:40

I would write a list of all the things you've noticed and take a copy to leave for the paed. You could separate out your observations and how it affects her. It might be worth printing a copy of the new diagnostic criteria as a lot of doctors are oblivious to EDS...

shouldwestayorshouldwego Tue 07-Nov-17 09:49:48

Is that ok taking the criteria? I don't want to come across as too obsessed even though I am I am not absolutely sure whether we meet criterion 2 A. Between us we probably do, not sure about individually though. She also has the autonomic symptoms and visual problems but they aren't part of the diagnostic criteria so not sure how much to focus on them. I think school would find it easier if they had one unifying disorder to pin to her, particularly with secondary transition coming up.

HardAsSnails Tue 07-Nov-17 10:13:55

I think it's fine. I was explicit in how I thought ds met the criteria for Asperger's at his first paed appointment. It's fine to say you think it's EDS but that there are some other symptoms you're concerned about too.

More and more research is showing links between EDS and all sorts of autoimmune/autonomic stuff, but most non-specialists just don't know this stuff.

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