EDS Hypermobility No. 2

[SparkleRainbow]

We reached 1001 threads, so here we go with a new thread. This thread was originally started so we could get together and share experiences and expertise in Ehlers Danlos Syndrome, Marfans, Benign Joint Hypermobility, and any other medical conditions including connective tissue disorders which cause joint hypermobility, pain and all the associated symptoms.

Yeah GOSH as z terroitry hospital can not do it i have checked with pld .

But I have been told their is a new Dr at ST Marys that is working with Proff G and she will see over 5 so am hoping he may refer

Proffesor pope lot confirmed type 6 kyroscoplosis is the highly likely type but shall see what is said

My wingspan ratio is not 1:1 either, I am 5'8" tall with arm span of 5'11"....wonder what that ratio is then? I also have the dodgy mitral heart valve, although really not bad, I am totally assympomatic. It is the degradation for the sternum joints which causes me pain, I have had that since I was 18, quite frankly fed up of that now.

THC - I am sure that Prof Grahame won't brush you off, but refer you to the right person. I have to have faith in him, cos the alternative is too much to consider. All EDS needs careful investigation and monitoring at the very least. I am so with GOSH for just dropping you, they are supposed to be the experts with complex cases.....they even said that directly last night on the telly programme.

Ds was on his feet a bit yesterday with a Jubilee party, by the time we got home the veins/arteries in his feet had become inflamed and started leaking again.....no management plan apart from rest and anti-inflams, no real explanation as to what is happening.... so frustrating can this be right?

googling suggest it's 1.05 for height:arm span.

Sparkle

They are just not in the Paticular clinic we were under they do complex hypermobility but where the problems are caused by EDs /hypermobilty so your Ds spinal issues /pain/dislocation etc should fit better

Where Ds it is now thought some of his is infact down to chromosome so not treatable as such also there is a wonder if he is having seizures that thete may be some issue with brafinal croon etc

and to be fair to them on rehab course lot of the stuff not approaite eg pain mamgerment , were sure Ds has it but not a problem for him also he is not lacking in confidence as such and is pretty game and will find a way even if means crawling up a frame etc .

It is more the gait and pace and posture that's the issue and to be honest have found people tend be only interested in their bit of Ds not seeing the whole picture

THC - we are finding this with GOSH too - we're told he's a 'complex case' - but its a nightmare just getting different departments to speak. The organisation and communication with the Evelina is a totally different thing - the support from them [all be it just for the bowel/bladder issues] has been first class.
We have been waiting months to hear back from GOSH - and I've emailed and left messages - the ansaphone tells you someone will get back to you in 3 days - its been over 3 months.
DLA have written to them apparently - so that won't be happenening any time soon either.
I don't know if I should carry on trying or just get on with it all by ourselves now. I wonder if they give up if they can't 'cure you' - we have so many things going on I sometimes wish we hadn't even started, they make you believe that all this help is there, then just leave you - you are no better than when you started - only now you have more to worry about as its all diagnosed!

Cars

I think there is a element of that and GOSH seem to be very much struggling to work with other hospitals as they consider themselves the specialist hospital so maybe a element of snobbery

Yeah call backs they are crap I have been trying for over a month Ti get them to call back and no reply but I tracked down a extension number and got the Dr direct don't think she was impressed wanted to know where I got the number !!

Sparkle sadly this seems to be the case that things are just left for us to mange

I've looked up on the website direct contacts - but have also been there when they have 'mentioned' parents who overstep the bounderies - what the hell are we supposed to do, when we try the usual means but no-one replies!
Even an email saying that they are looking into it would be good.

They may be a specialist hospital, and they asked for all our care to be moved there - have to say I'm not going with that, as they are so bad at follow up. You get a diagnosis then, well that's it - off you go.............. where to exactly?!

Cars thing is since it's innpublic domain took me 5 mind I googled her name and gosh and it gave me extension number it is infact on their own website

And yeah I'm one for overstepping boundrys and need to be involved ST every stage till They earnt my trust and respect I'm the same with schools infact anyone who comes into contact with my son

Cars how old us your Ds as from 13/14 they ship them out to transistor clincs anyway and yup I'm keeping his care as such where they know him . Local Physio have known him 2 years see every 6 weeks they know Ds

THC - he's just 8. I'm with you in not giving a flying one what they think - if we don't push for help no one offers it!

Anyone here been to Tribunal for SEN - we home ed, but have found a school - but its an independant special school, and we need the LEA to fund - they do fund 83% of the children already there, but only after a fight.

We need to have a change of school on the Statement, plus the Statement added to - another effing nightmare looms it head.

THC - I am sure you are right in that my ds is a clearer cut case of eds III, and everything is related to that, dislocations subluxations, pain, urinary problems emotional problems etc etc.....having said that, our physio and clinical psyc are both good and I am not confident that GOSH can do better than them. The thing that I would like to get from GOSH is related to what is going on with ds' spine....and as that is so unusual it would seem I am not sure they would know more anyway.....well that is what our rheumie says, and his colleague came from gosh just over year ago.....I still debate it all the time in my head. Dh is not helpful, and just shrugs his shoulders. double

Sparkle infact I would ask for spinal unit to review him

There is a new lady at ST Mays that has a good name am hoping that seeing Proff Grayham we can get refered to her

xposted nev - sorry - I didn't go to tribunal for my ds, as he doesn't have a statement, I told them his needs were covered under Equalities Act, I had to fight them though, just to get him into a DDA compliant primary school. It took 9 months, many meetings, support from Consultants, support from MP, support from Sarah Tether, sit in at Local Authority Council Executives Office, threatening them with personal contact with BBC Radio 4 Political journalist, and threatening them with sueing them personally if anything happened to ds! So I do appreciate how disheartening it feels to be at the beginning of what seems to be an unending and very difficult battle. All I can offer is don't give up!

Ds woke this morning and was crying in pain. The arteries/veins in his feet have collapsed/inflamed (or whatever is happening to them) again, too much jubilee partying at school!

(((hugs))) to those who need them. DS2 is meant to be at preschool today but I had to go and get him because he fell asleep. We had our appointment come through with wheelchair services and it's on 11th June so not long to wait. The OT came to do DS2's school assessment this week and she was lovely and actually asked DS2's opinion on the chairs which was a nice change.

Is there a spinal unit at GOSH? Did they have any direct contact with your ds? I am sure Prof G will refer on, when we met him I found him to listen well and to be very kind. Uou have done all the right things, GOSH have said they can't help, I am sure he won't leave you hanging like they have.

Ellie - him falling asleep is food news really, as proves to them what you have been saying, and they have previously been oblivious to, about his levels of exhaustion. More ammunition to be used at a later date!

No nit far as I know but there are several spinal units across the uk I would ask for Referal to them not orthopaedic

Now you do realise there's some bemused dog thinking salt but where is the chips

Ah Ds has been known to nap in a corner or head on table when he needs to sleep you can not stop him

@ salt!!!

Ds' rheumatologist is adamant that the Royal Ortho Suregon ds is seeing at the ROH is the best person in the Midlands. I am unsure, but have an appt for ds to see the Paed I like, as ROS has written to her wanting ds to have another MRI, rheumie doesn't want to do this, and so will lay the issue before her and see what she says......

I have just been writing to Sarah Tether re the new Children and Families Bill and the way ds would not be supported in the new system as he does not have learning difficulties! We shall see.

THC - what's the name of the woman at St Marys - Prof G has referred us to a "Dr Nelly Nilis", but when I googled that name, I think he's misspelled her surname, and it's Ninis. She seems to be a meningitis expert, so not sure how that translates to PoTS in EDS...

salt is good - DD was told to eat lots of crisps as she must keep her salt levels right up. Chuck some over this way

Think it is dr Nelly ninis

Midnight

That's her and she is good friends son is now under her he has EDS Gastro issues and pots a lot of people are feeding back good things about her she is working with Proff Grayham

ooh, good feedback! I'm so pleased for DD that she's finally being taken seriously, adn we're now seeing people who know what they're talking about. It's such a shame that it's not happening for most of the rest of you .

THC, I'm sure Prof G will be a lot more helpful for you than doctors you've had so far - he was great with DD, and really clear about what he could and couldn't do, but where he was going to refer on to and for what. When is your appointment with him?

26th June and truth I'm Not expecting him to be able to do a lot him self it is more he may know who can deal with some of his issues