Hypermobility Syndrome in Kids - Help Needed Getting a Diagnosis with a Difficult GP ???

[rockinhippy]

My soon to be 10yr old DD is believed to have HMS - long story short, lots of health issues over the years,

Stomach trouble, diagnosed as IBS
Skin/Urticaria Flare ups diagnosed as Exzema
Both it turned out were made much worse by steroid asthma inhalers, so improvement since coming off those, but still a bit of an issue at times

LOTS of various weekly, often daily aches & pains diagnosed as "growing pains"

VERY bendy, even knowing little about the scoring system I can see she scores 6 or more on the required scale, but she's over flexible in other areas not mentioned, knees swing sideways etc etc

Way more than her fair share of accidents & injuries involving ligament/tendon damage, sprains & fractures :( - thankfully - if thats possible - most of these have happened at school or clubs, or I'm sure from the hospitals questioning we'd have had SS on our backs by now.

Bad injury a year ago had her seeing a physio for several months - she was lovely, VERY experienced said DD was hypermobile & hence the slow recovery & specialist care needed with physio - she can't "officially" diagnose HMS, I've been told that is a Rheumatologist -

GP refused referral, telling me not to project my own health problems onto DD - I've asked several times & had similar fob offs

Gastro Doctor pulled her skin, which isn't stretchy & said she was fine & didn't need to see a Rheumy

Since then we've had yet more fractures due to over flexed joints & daily pains.

We even met a sports therapist mum at a garden party, whose own DD had been diagnosed that week & she asked me about DDs injury & turned out she recognised her as being like her own DD in her flexibility.

Thankfully DDs School have been great in working around this, but who's to say the next one will be, so a diagnosis is needed.

A few serious health issues over the years have taught me to trust my own instincts over our Doctors, DD wouldn't be here now - so I'm going back again to insist on a hospital referral tomorrow morning, but not expecting a good reception, so any tips or advice on how to get her to listen properly & get the hospital referral much appreciated

TIA :)

Can you see a different GP/change practice.

change GP - without a supportive GP it's incredibly hard to get both a diagnosis and actual help . (even with a good GP it's hard - we've had to bypass the local paed - who unbelievably is the specialist rheumy paed - as apparently DDs EDS and PoTS is "due to deeprooted childhood trauma" and the best help for her was to see a psychiatrist.).

I've found GPs much more use when you know exactly who you want to be referred to (and even better if you've managed to clear a referral with the cosultant's secretary, then you can say "oh, but Dr X is happy to see us" ).

Where in the UK are you? Come over here and see if anyone knows some good locally to you. There's a paed at St Marys in London who I have good vibes about (we see her next week) who takes referrals from GPs, but somewhere like GOSH needs to go via a consultant. Depends how good you local hospital paed department is.

Thank you :) - I didn't know there was a HMS bit over on SN :)

I saw the GP this morning & took DH along for back up - annoying to need him to hold my hand as he's far less confrontational than I can be when needed but seems it did the trick - I cut straight to the chase, told her I was doing it for her benefit as she had a surgery full to see - no argument at all -

DH let me do most of the talking, but piped up that its not on & that if DDs accidents/fractures/sprains etc hadn't been at school/clubs we'd no doubt have SS investigating us by now, which I think helped - it then turns out our GP is Hypermobile - I've asked several times for referrals over the years & thats no been mentioned - it was funny though, as she showed DD what she wanted her to do with the tests -

GP was shocked at just how far DD could bend back on all 6 joints she checked - double what GP could do & then DD started to show off with swinging her knees sideways & more - GP diagnosed there & then as no doubt its HMS - & agreed it links ALL of DDs other problems - GERD, IBS, Wry Neck etc etc - just so frustrating that she blatantly hasn't listened to a word I have said the many times I've asked before, but at least now on the right track.

She is sending DD for a blood panel, calcium, vit D etc all of which I'm confident will be fine, but GP explained that was because Rheumy would expect that done before she can refer & then its referral for an official diagnosis & see what help is available for her - I feel a mixture of sadness & relief at finally getting somewhere, but glad that due to having aches, pains & stomach trouble as a kid that was often put down to my attention seeking, I've never disbelieved her & she is a real trouper & just gets on with it & doesn't let any of it stop her anyway.

Got to admit it has both DH & I wondering now - neither of us realised her extra bendiness wasn't normal for a long while, because we were both the same, especially as kids & now I'm reading its linked to Fibromyalgia, which I have a diagnosis of, so suspect I may also have it as a DC, though would fail testing now & DH is exceptionally tall & DDs party trick is pulling the very stretchy skin on his elbows - all things I'd never thought of until I started reading around

& good tip on finding out WHO we want her to be seen by IShall thank you :) - we are in E.Sussex & the blood tests give me time to find out who we have that is good - so I will pop over on your link & ask around, I've also joined Hypermobility Org

How about the School Nurse? Have the school had an ASN meeting to review her needs (I'm in Scotland)?

thank goodness the GP listened to you . First step out of the way, now think about what ongoing support DD needs, and see if you can find out the best person to provide that (eg my DD1 is hopefully going to get physio support as she has joint pain; but DD2 needs someone more specialised).

rockin - i'm up the road from you on the Surrey/Kent border - will PM you

Thank you :)