Here some suggested organisations that offer expert advice on SN.

EDS Hypermobility 3

(826 Posts)
elliejjtiny Mon 11-Jun-12 23:12:28

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 grin.

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.

Hello all,

DD is lots better now, change of painkillers seemed to work, but still no real idea what it might have been. I need to book another appointment with the physio, so I'll check with her if there's anything we need to be aware of.

Fingers crossed the funding comes through for the clinic - having somewhere where you know everyone knows what you've got and what it means will be fantastic. DD is fed up of having to explain to every single medical person what POTS is, why she avoids ibuprofen, ad why her pain levels may not match up to what is actually wrong. You know when you're in hospital and they ask "so is there any other medical issues we should know about" and "do you take any other medication"?

And advance notice, this years STARS conference will also have a big POTS focus as Dr Blair Grubb is coming over from the States to speak, he's at the forefront of research and treatment from what I understand.

THC did you do gp referral to the private clinic or were you able to just go direct? Have had a look at the St Johns and St Elizabeth's hospital site, where all the good people (well ok not all, but most grin) have set up the hypermobility clinic. It says GP referral most times, would just like to get on with it and not have to wait for NHS!

Babyjane scores are irrelevent for ds and me. We scaore 4/9 to 5/9 these days, as have no hypermobility in thumbs and limited in wrists, but we are both extremely hypermobile in our spines, hips, knees and shoulders. We have a history of major and minor joint dislocation and subluxations. Professor Grahame wrote an article about not relying on scores, but proper and thorough clinical examination.

FLIGHT SOCKS!!!!!!! Inspirational idea THC.....you come to my rescue yet again.

babyjane67 Thu 04-Apr-13 19:56:19

ok so the tests arent necessary then but if suggests it will get them done
we had dds orthotics app this morn&he agrees that the right foot is looking worse again(like when we first startd seeing him in 2010!)so hes orderd new boots&insoles for her which we have to pk up in3wks time(same day as we see orthopaedics)insoles with much more support.
so we see what happens with them&ortho app
will ring school next wk&see if i can see the head about it
is there anything else i could/should be doing in meantime?

auntevil Thu 04-Apr-13 23:43:33

The fact that we were all high scorers, plus other issues, such s IBS, was what got us the appointment with genetics. So in that respect they were useful. But the testing has its limitations as said before. You can be a low scorer and suffer more problems than a high scorer.
I think it was the physio that did a really good joint mobility assessment. She focused much more on DS1s lower joints. THis explained why he has more issues than the rest of us. She devised a lot of exercises to strengthen the supporting muscle around his weak joints. She is also trying to get his ham strings tight enough to support, yet loose enough not to 'twang' .
To me, this support is far more useful than a dx, and far easier to explain to school. We are lucky that we have physio attend school weekly. This physio has explained what we are trying to do, in lay mans terms, so was totally acceptable.

Flight socks now on his feet, can't tell if they are helping yet as he can't get of the settee on account of his neck and shoulder pain.....heh ho!

sparkle i just phoned them direct and asked for Proff G secretary no referral needed sorry Ds in pain

We in hopsital but seizure related but out of picu now

Gentics for us was becuase ds was not following pattern of rest of us and they wanted to look and well thats due to type 6 not type 3

sadly i suffered one of the worse out comes after a fall due to EDS ( am now in wheelchair with sci , but its not slowed me and bonus is my knees dont dislocate any morewink

arghh i cant do no conferences this year as broke as of to wdw in September

Was just looking at EDS conference in the States.....with wistful glazing eyes....can't afford to go to that ever!!!! Next year THC we will meet again.....!

grin at THC drastic measures to ensure no more knee dislocations!!!!!!

THC is there any more developed thinking about ds' seizures?

I shall ring them on Monday and get an appointment then! Enough procrastination I think! Bad pain day today for ds, although I suspect not as bad as for THC ds!!!!!

May is EDS awareness month...how can we celebrate that!

nope no more thinking .nah sparkle he still fullof benzo so high as kite and very sleepy .But GOSH still dont want us back due to his other collapses he can no longer attend rehab clinic etc as second his muscles had enough down he goes and out for count

intresting gastro been up as ds is being sick and queried delayed emptying once saw Eds on dx as meds just sitting there in stomach then hurls after few hours .which course is issue getting home

Were seeing Dr ninis at st johns so can get things moving before her nhs clinic becomes official and will move over to that

is delayed emptying the same thing as gastroparesis ("stomach paralysis")? DD had that (although the gastro paed was totally determined it was constipation) treatment is omeprazole, and also managing stress (as stress can disrupt any of the autonomic functions). Treat the physical symptoms as physical symptoms, and then look at what the triggers were. So could be a virus, or over-exertion, or anything messing with the bodies equilibrium.

Yup very similar but trouble is he ends up hurling after few hrs nothing is breaking down or digesting so omerprazle won't help as its NOt acid based infact complete opposite it sits there undigested couple hrs later up comes looking like it was when swallowed which due to his meds is dangerous not absorbed

Not constipated had scan as worry was bowel blockage twisted . On anti sickness meds and they tracking down gastro with experience of eds as admit they are not experts in it see if between gastro teams and neuro come up with idea

I may have mentioned that Dr ninis may have idea who to talk to . They called Gosh but due yo extra complications etc fobbed off no suprise there

auntevil Fri 05-Apr-13 22:47:15

DS2 is now under evelina for gastro. Another with delays in emptying. No constipation, but still keep trying to keep him on meds for constipation.
He also has problems with the 3 muscle movements needed to completely empty, which I think could be EDs related, but no takers at the moment.

CouthySaysEatChoccyEggs Sat 06-Apr-13 01:44:59

I'm very interested to know about constipation / slow transit issues wrt EDS.

I will definitely mention it to Prof G when DS2 sees him in May.

Cost is blinding to do it privately, but necessary now.

Am getting mother to write her own potted medical history down, plus Dbro's. am writing my own plus DD's and DS3's as well as DS2's.

Mostly because there IS a genetic Hypermobility + gastro issues + leaky heart valves + collapsing veins on blood tests + extremely slow healing + cigarette paper scarring + doughy skin + allergy issues + resistance to local anaesthetic link between us all.

I just hope Prof G can make sense of it all!!

Courthy

It was the best money I had ever spent , am about bankrupt self to see Dr ninis private ahead of her nhs clinic set/oct time to get referrals

He made a lot of sense

Aunt there are a lot of options muscle movement /bowel wise . My bowel does not function at all have no control of it ( mines caused by my SCI rather than eds )funny one way as I have no control on farting first clue is the noise or the gagging green faces so when people say dud you have to I say yup can't stop what can't feel [grin{
But on serious note there is lot can do to help with regular bowel motions even with non functioning one I can now normally make sure mibe is empty if a morning at home

Bleah Dr agrees that its looking like Gastroparesis as he presenting as every bloody symptom of it /(

The undigested food bloating and then pumping several hours later and food completely undigested even breakfast stuff

On holiday out for dinner 2 bites massive puke everywhere . 5 mins later he is hungry !!! As stomach now empty

Not constipation but his stools are very pale and stinky to as he is not absorbing

I need find a gastro with experience of eDS as Dr admits out his experience if I can find a name he refer but he has warned me that a peg is likely dud to weight loss and the fact ds has problems chewing anyway sad so was already struggling with calories

Feels like final kick in teeth

bizzey Tue 09-Apr-13 20:46:21

Hello again all ..if you still remember me !!....As usual I have not posted for a while as I did not have any helpful advice for you lovely ladies but I have been reading and wishing you encouragement !!!

We are still in the system and not getting anywhere ...but things are happening ...if that makes sense confused

Ds is being seen by pead,comm pead,physio,genetics,and due to go back to OT soon ...oh and a CAMHS referal has been made as well.

He is going for his MRI soon and alot more bloods....oh and finally ENT are getting involved re his nosebleeds.

I think I also burnt myself out for a while and needed to step back and recharge myself from all the fighting and follow ups !!!

Hope you are all well ....well...as well as can be expected grin!

THC - In Prof G's St John's clinic he has gastro specialists in the hyper mobility clinic, you could go on on the website and get their names and google them to see if they have NHS practices.
Not good news, so sorry.

Bizzey - big wave!

auntevil Thu 11-Apr-13 12:53:41

THC - sitting here on hols with family and I seriously LOL at your post. Everyone's asking me what I'm laughing about!
DS2 had some balloon therapy, which highlighted that his muscles were not working in a co-ordinated way. Dr told DS that now he knew how it felt to use the muscles correctly, to recognise that feeling and do it like that each time (7 or 8 times a day) he goes. I was to tell him to do it properly.
It's all well and good, but he is 7 . Not sure if he can remember the feeling, and realistically, apart from reminding him, how can I tell if he's doing it properly?

Have to admit, that we have had a trip to A&E whilst on hols. Very good experience. In part because I may have omitted to mention hyper mobility/EDs as they were looking at his ankle. So we were treated to the full works to check it all out and not given the 'what do you expect' attitude that we get at our local.
Hello bizzey, hope alls well big wave for here too.

Have just been on the phone to St John's hospital and booked an appt to see Prof Grahame, for ds during half term. Am feeling very positive about it. Thank you as ever THC!

CloudsAway Fri 12-Apr-13 12:57:43

Can anyone who's been there tell me what an appointment with Prof Grahame includes? I understand that it's about £300 - but does that include whatever tests are needed, if any, and any of the physio assessment etc, or is it just an appointment with him and everything else is extra?

I imagine that everything else is extra, that is just for the consultation and clinical exam, I would have thought, but we haven't been yet so am only guessing!

CloudsAway Fri 12-Apr-13 17:19:08

thanks. I will be interested to find out how much extras are, especially the physio assessment part of it, and whether there are also any blood tests/x-rays/etc

Physio is £156 for an initial appointment (60 mins) then £78 for every 45 min follow up appointment. We've had 3 appts so far, and will have at least one more as there are specific things we want looked at. Dr N reckoned 2 or 3 appts would be sufficient. But you do get letters after each appt (they arrive much sooner than the nhs ones wink) so tbroretiy you could then go back to nhs physio with those. We're not, simy because we don't trust the local ones, but I may look at private locally which will be about half the price, now that I know what I'm looking fir

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