EDS Hypermobility 3

[elliejjtiny]

Not sure how to start this off so I'll just copy and paste sparkle's opening post from the last thread and hope I've spelt hypermobility right in my thread title .

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.

thanks for the information; that's very helpful. I know the website says that you can usually have it all in one day, the consultation and the physio assessment etc. It's good to know that you could potentially then still go to a local physio for follow-up.

thats just for assesment and meeting but its worth every penny .He can also in his letter make requests for your Gp to refer you to others on the nhs

hmm midnight who you see for physio?

ah looked trouble is we run into issues due to type ds3 has ,as does not fit or run true to type :( but i may give them a call and discuss it

i get fed up when lot say oh kids anxious arghhh due to his sn ds3 has no clue how to be worried about things he just gets on

ds3 cant do specifc regular physio as they found it makes him worse and he goes into caterlepxhic state and collapses has no control at all over it.it even got us kicked of the GOSH rehab clinic as physios got scared of it as you can not wake him for couple hrs after

I think it's the physio and orthotics that would be the most use; already have independent OT who flagged it up, so not sure there's any real need for diagnosis (reasonably mild), but a physio/gait person who knows about it would be good.

THC - we see Swati - I think she's the only paed physio, and works there Tues and Weds.

what she like midnight ? or is she one that insist on regular repeat exercise ?aka gosh style ?

i need someone who can think outside the box and that ds3 extras make the problem harder for everyone involved 9 they pretty sure has chromosoma issues to that cause some of the physical problems)

she's quite like Dr N in style (in a "get one with in and don't whinge" manner - which works with DD2) - we have regular repeat exercises as that's what DD needs (plus the nagging ), but if you're paying and need something different, I don't see why she couldn't do that as well. I'd suggest ringing up and having a chat (assuming that's possible) and see what she says.

At one appointment, the little boy before us was riding a bike during his session, so presumably she's open minded about what's needed.

Alternatively wait till you've seen Dr N, and get her recommendations on board as well - S got a copy of Dr Ns letter about DD before we did, so was more up to speed on DD than I was at that point . (Dr N had run through some stuff she wanted DD to be doing, then ran out of time - as we'd been squeezed into the end of a different clinic - and said she'd put the rest into a letter, which being NHS took a while to get here, but S got it directly).

yeah ds cant ride a bike as he falls of the thing sidewards and steering and peddling cant do

hmm not so sure work for ds3 then as he gives it his all but just cant do , like walking he keeps going even when falls over and staggers like he is drunk .physio stopped him last time

Think will wait for Dr N as so far everyone seen him convinced not just EDS at play which may alter and hopefully letter be quick as first appoinment should be private

. may be less painfull than getting bottom of things have pinned oot of hope on Dr N having some idea

I am always going to be an advocate for getting a definitive Dix, even if it is just mild, as you have always got that to fall back on if things alter in the future......just a thought.

Arghhhh still no news on date SE Dr ninis even Goibg private her secartary trying pin her down herself

Trouble I'd LEA are waiting hear what she says regarding school . Trouble is lol they seem think she has some kind of looking glass and can predict how he be on 12/months 1/2/3/4/5 years she make a fortune if could

Problem is all his little extras keep adding but no name yet

rubbish day yesterday - DD found out that she's being moved onto a DC underachieving mentoring scheme at school - the languages dept decided that the top sets woudl do GCSE in Y9, then carry on with an AS over Y10 and Y11. Which is a massive step up from GCSE, and is being done at the same time as 12 GCSES (for top set DC). Ad with the amount of time she's had off school recently (discovered she hasn't been in Chemistry since 15th Feb - timetabling means she has all her Chem lessons in one week of the 2 week timetable, and that's the weeks she's been ill) naturally she's struggling to keep on top of everything . And while extra help is always a good thing, I'm not convinced that extra sessions at lunch ad after school are really the most appropriate thing for a DC who struggles concentrating for 5 lessons a day as it is, and spends most of her non school time falling asleep .

And then on top of that, she fainted into a wall, and landed with her leg twisted the wrong way, and has sprained her hip, so is hobbling around on crutches .

And today, instead of spending the day on the sofa as per hospital advice, she's dragged herself into school because the languages teacher moaned at her for not being at extra conversation sessions he'd arranged at lunchtimes, and the next one is today.

So next week I have to go along to the "concerns" parents evening, and explain exactly how rubbish DDs life is (it goes school-home-physio-nap-dinner-bath-bed with no social life ) and how her teachers need to stop putting pressure on her (and see if I can negotiate dropping the AS).

The school is pretty good all things considered (they don't freak out when she faints any more), but it's so wearing when you have to explain the same things over and over again...

Anyway, thank goodness fro this space to rant with people who know what it's like

for you and your DD Midnight. It can't do any good for her self esteem either, although by the sounds of it, she might be almost too shattered to even notice.
Sometimes I feel like giving each of the DSs a little passport with their medical details in - with a glossary explaining what things mean, and a consequences section and real obvious points, just because I sometimes feel like a broken record.
Had a good genetics appointment today. We had a good discussion about all the other symptoms that EDS might have. She was saying how the 'official' symptom list really only scratches the surface and how that some of the things I mentioned she had heard over and over by others and that she wouldn't be surprised that as research gets better and better that these will add to the symptoms.

that's actually such a good idea auntevil, might do that for DD. She does have these alert cards which she's added her medication list to, and also put "I may hyperventilate, please give me space" on, and her friends have some too, but something slightly more official looking, with the "what this actually means day to day" would be quite good.

Have you seen any of Stickman Communications stuff? We have the pots booklet which does show exactly what it's like.

It just gets worse for DD - today was her language speaking mock. She freaks out at the thought of speaking in public at the best of times (posted further back I think about her English speaking assessment which was being videoed ), adn this was sprung on her a bit. She told the teacher (not her usual class teacher) she was a bit stressed, and that she may faint. Teacher was dismissive, DD started, fainted, fell off her chair, and twisted the same hip . Now can't put any weight on it at all, but is refusing to let me take her back to A&E to get it checked out. Teachers respose was "oh, maybe next time you tell me you feel faint, I might take you seriously". In fairness she's not necessarily aware that DD has a care plan, but if a DC tells you the reason they have crutches is because they fainted yesterday and sprained their hip, you might think that maybe the fainting is a real thing?

I collected the poor thing at the end of school, and she went straight up to bed . One more day, then it's the weekend thankfully

Midnight poor dd :( and they all should bloody know she has care plan tossers

We spoke to swati but no go under hyper mobility clinic die to type and extra complications he has waiting see if Jane simmonds will take as not do under 11 normally

No news DR N

But looks like being sent to GOSH neuro muscular

We need to do a spreadsheet of hypermobility, who is responsible (what team) overall for care and what the service is like from that team.
That way, we can let others know who to aim for if they have concerns.
For us it looks like genetics might take up the mantle - who in fairness appear to be the most switched on and organised of the teams we have dealt with so far.
Neurology, rheumatology, general paed? who oversees your DCS care?
Agree with THC, midnight, no excuse for a teacher not knowing about a care plan for children in her care. Thats just bad teaching practice.

auntevil...That sounds like a good idea....but for me I am getting more help from the community pead .

A little bit of an update though...ds's literacy support lady is now pushing for him to have ICT support to help him with school work

Don't know what they do /have at school for him ? lap top or tablet thing ?

His older brother's are not impressed ....apparently their hands and wrists get achy and sore when they do allot of writing now as well !

Most schools have banks of either tablets or laptops and banks of static pcs as well.
Lessons as early as nursery include ICT, so no school should be saying that they don't have the resources on tap.
If it becomes a longer term solution for all lessons, they can then get around to buying another from the considerable SEN pot!

aunt ..you are so right ...why should I be worried about the cost to school when my sons education is at stake !!!

We have laptops at home with key board which he is use to to and I think it would be easier for him than touch /screen typing....but I have never tried tablet/I pad so do not know really what I am talking about

DS age 11 had to explain what they were !!!

Oh and I think it will be long term apart from ?maths ..

DDs school have Alphasmarts which is basically just a wordprocessor, and means you aren't tempted by spellcheck and the like .

Re the teacher/careplan, I'm not especially bothered by this particular teacher not knowing as she only comes in a couple of lunchtimes a week for language practice, and sees DD once a fortnight.

Re care - we see Dr Ninis at St Marys in London (so paed consultant), but that's mainly concerned with POTS. The hypermobility is private physio in London as local hospital refused referral, and local GP/minor injuries/A&E for sprains etc. GPs mainly pretty helpful with referrals actually, once we got past the dinosaurs and Rubbish Paed. Helps that I'm what's known in DDs notes as an "educated and involved mum" (thanks to STARS, hypermobility.org and Dr Google ).

You should be proud of that title Midnight. If I ever saw my notes it would be more likely to say smart arse busy body with a penchant for writing complaint letters

i would push for laptop rather than alphasmart as harder wen they hit senior school to swap over .also for LSA to add worksheets programs to

Midnight my gp is fab as openly admit no clue and he asks me whats going on in EDs world

hmm Gentics seem more on ball a convinced something going on its just what

ugg we dont have a overall we do have community paed who is shit and couple eyars ago caused me a lot of trouble ( involved SS luckily i had proff pope by then backing me and in turn about GOSH actually supported me afte rmet ds3 )

.We have another paed at local hospital but not EDs or POTs as she knows nothing about them she is looking at hi height /weight or lack of

we have urolgists do do with issue sthere

Physio/ot who are getting better but dont really a have clue as ds3 stubbornly refuses fit a box on their sheets

swati refused as admits not enough experience with his type but waiting on call back jane simmonds

Gentics is GOsh

Ds3 was refereed to Dr ninis on nhs but no funding till Set/oct time .Waiting on date private appointment

and we still have proff POpe who just requested the Tenascin-X deficiency gene thingy test which hopefully results 8-12 weeks

Dietcian/gastro waiting referal to Cambridge

and looks like neuromuscular may be GOsh unless ca. get to dr N and get reccomedation elsewhere

as for coordination that will be me .There is not one person who deals with everything .I am hoping DR N interest sparked can actually pick and run with it all

i am looking into who would be a good person to see in the states am wondering if that where best information come from

any idea?

Dr Blair Grubb in Toledo (or his nurse specialist Barbara something) for POTS, or the Mayo Clinic.

But whether you could find someone who could tie all the different bits up together is another matter .

yeah midnight im hoping when we finally get see Dr n she may be good at digging and knowing right people to see