Ehlers Danlos in teens.

[Dawndonnaagain]

Am totally convinced (and have been for years) that dd has this. She has spider like hands, can do all sorts of very strange things with them (above and beyond my hypermobility) and has many other symptoms. Last time I got a referral, we saw a lovely old boy, retired but standing in. Asked me if I was a nurse whenever I asked a medically related question, asked dh if he was a doctor when he asked! Anyway, despite a particularly impressive a&e record, dd was told she's just a 'springy teen'. I am demanding that we see somebody else but if anyone has any ideas to get people to listen to us, it would be much appreciated. Thank you.

Hi, I am pretty 100% sure I have ehlers danlos, I dislocate fairly easily (not all the time or anything but I have had a few dislocations over the years). Can pull the skin up on the back of my hand pretty far and curse my fingers back, all apparently telltale signs. My mum also has it and hers is confirmed (I think she and her brother were some of the first diagnosed with it or something like that!). Anyway, in spite of all this, and being told by Drs/physios it 'looks' like ehlers danlos I have never had a firm dx, in fact the physio I went to see once said she wouldn't know how one gets diagnosed with ehlers danlos.

So - my point being it is rather hard to get a diagnosis! What were you hoping for from a diagnosis? There is not much that can be done although thinking back as a teen a dx would have been helpful for me esp in PE when I could have used some kind of support (literally, I now do light running and wear knee supports and often ankle supports too!). However I think a lot of the things that can be done are things you can put in place without a diagnosis.

The only other things I suppose are - that apparently it can cause a heart problem, my Mum has had the scan for this and was fine, I haven't but I suppose that is worth knowing, and if your dd does injure herself a dislocation may be dismissed (as it was for me, wrongly) because it didn't fit the pattern for normal dislocation. As it was because of this I had an dislocated elbow for 3 days which included a Yorkshire - London train journey in pain and feeling sick and generally crap!

*CURVE my fingers back not curse!

This may be of interest to you.

Would the NHS consultant however, be willing to refer you:-

www.nwlh.nhs.uk/services/EDS-national-diagnostic-service/

Thank you.
Manatee She has a lot of pain, her periods tend to go for six weeks, she has a lot of urine infections, all of these can go hand in hand with EDS. It also may mean that when we attend a&e with (yet another) sublux, somebody may listen to us so that I don't have to go through the constant rigmarole of demanding an x ray. She also has a consistently fast heartbeat, which concerns me. She is 17.

Attila off for a look now, Thank you!

Uiniversity College London Hospital has a teen hypermobility clinic - DD2 got her EDS diagnosis there. IME having a "named" condition is helpful for school, exams and A&E departments and MI units, as they don't then get so stressed about why you're there again with yet another sprain and abnormal levels of pain. Bugger all use for getting NHS physio though .

Biggest problem we found was that before diagnosis, non specialist doctors (plus a few who ought to have known better) decided that because she couldn't bend her hand all the way back to her arm, then she couldn't possibly be bad enough to be anything other that "just a bit bendy, lots of people are you know", and the current diagnostic criteria are better than they used to be, but still focus on just a few joints. So if you don't fit the exact criteria, non specialists can fob you off.

Also rheumatology has a big split between those doctors who say EDS is the same as Joint Hypermobility Syndrome, and those who say it's similar but not the same. The two sides don't talk to each other, and if you say to the wrong one you suspect EDS, it ca take longer for them to take you seriously (made that mistake with DD1s doctor who eventually diagnosed her with JHS, despite the fact that DD2s doctor is one of the top EDS people in the country). You might be better advised to talk about the hypermobility and how that's causing problems, rather than asking about EDS as a first step.

Just read your update - have you looked at POTS? That can run alongside EDS (DD2 gt her POTS diagnosis first, and we later discovered the EDS).

Quick update. Been to GP who is equally convinced so now have referral, will follow up later.

Me and dh have eds, as do our four dcs. Dd1 is 12 and has other conditions related to the eds. we have been seen t various hospitals including gosh and nwlh Kennedy Galton centre.
Pm me if you would like help/advice .

Hi there,

Lovely to find your thread and see someone else with my concerns. I just wrote my own post on EDS as we have just been told our 10yo DS has it. How far away is your follow up?

Im a sort of bendy type - nothing major and nothing which has ever caused me any concern at all - at the ripe of age of 38. My son can certainly do stuff with his hands that I cant, in fact I cant even stand to watch what he does. He also has flat feet and over pronating ankles (I dont but as his father and grandfather have, assumed it was a family trait). He can touch the floor with his palms with straight legs. Can your DD do any of these things?

His diagnoses was made on these points alone. He is booked to have a echocardiogram on Monday to check for a loose floppy mitral (?) heart valve.

Im spinning out.

What to make of this? Does this get progressively worse as he ages??? Ive noticed no difference to my body over the years. Im terrified my talented sports mad son will end up in a wheelchair or worse going by what the doctor told me :(

Reading various EDS blogs online hasnt helped either. Dr Google has done his usual and depressed the hell out of me as well.

Do you know what the difference actually is between someone being "a bit springy" and having EDS?

Sorry to hijack your thread but Im going out of my mind in panic.