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EDS diagnosis for dd4, now what?

(5 Posts)
WienerDiva Tue 27-Jan-15 13:55:13


Been off here for a little while and in the meantime my dd4 has had a diagnosis of Ehlers Danlos hyper mobility Type3.

I guess I'm keen to know what happens now?

My df still needs a pushchair so I've upgraded to one that takes children up to 22kg, but what about her future? After looking through other diagnosed people's case studies some of them didn't even get a diagnosis until they were near adult hood and have now ended up in a wheelchair. Is this a possibility for my dd? I'm not scared as such, just want an idea as to what I might have to expect. The drs have all said she is VERY hyper mobile and she does frequently complain about internal pains in her stomach, back etc.

Any info is most appreciated! TIA

Runningtokeepstill Tue 27-Jan-15 14:35:47

There's quite a range in how people are affected so although it's tempting to look at others' situations and try to project, it may not be that helpful.

My ds3 has an EDS3 diagnosis but how it affects him is totally different to how the EDS3 dd of my friend is affected. On some of the sites dedicated to supporting people with Hypermobility Sydrome (hms) and Ehlers-Danlos Syndrome (EDS) you'll sometimes see a warning for newbies not to panic as it's often the people who are struggling most who post most (looking for help or trying to support others) so it can present an over gloomy picture.

The advantage of an early diagnosis is there is a chance to put things in place to help - physio exercises, OT support, pacing, aids and adaptations where needed. The people who weren't diagnosed until adulthood include quite a number of people who were forced to struggle on without any help as no-one knew what was wrong so they were labelled as malingering or having mental health issues and we don't know if this has lead to more problems in later life.

Who diagnosed your dd? Will she be having ongoing support?

WienerDiva Tue 27-Jan-15 16:23:09

Thanks for replying. My BIL is a Dr (not in our area) but noticed it and told us to go to the GP. Luckily my gp had heard of it and we went through all the channels that are dictated but their protocol. One paediatrician we saw fobbed us off so our go referrers us to a geneticist that comes to our local hospital two days a month from John Radcliffe. That's who diagnosed her.

We've not heard anything since or what happens from here on in really. I've been having a look online and have found a couple of specialist drs that have clinics in London but they can't see her until she's 5.

I think you're definitely right though the sooner I can put some therapy into place and start strengthening her muscles the better. And to not look as to what happens to others is important.

Thank you so much for responding, we are pleased to have a.n early diagnosis though

senvet Tue 27-Jan-15 16:31:04

my friends ds found hydrotherapy great.
He is now a teenager, and loving life.

Good Luck

WienerDiva Wed 28-Jan-15 07:00:24

Thanks senvet, my dd loves the water so that could be a brilliant idea!

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