EDS Hypermobility

[SparkleRainbow]

I thought I would start a thread to see how many of you are out there, fighting the battles I am fighting. I have EDS myself, had genetic counselling and even though mine is quite severe I was told no problems with having children. I have three dc, the eldest my ds is the only one believed to have inherited it. He was diagnosed by Prof Grahame at 19 months, and has always had pain, but it wasn't until September last year that he dislocated vertebrae in his neck C2 and C3 by turning his head to talk to me. He has been in recovery ever since. In the last 11 months he has dislocated or subluxated his neck twice, his knee cap three times, his left shoulder three time and the fingers of his left hand once. He has missed so much school, he is in pain almost constantly, he has a health plan and risk assessment to be in school, he is depressed and frightened and he doesn't know at all how serious his neck problem is. I am constantly fighting with some of the Consultants, and school, but there are also some wonderful people too. I would love to hear others stories, very selfishly to know I am not alone and neither is my precious ds.

elliejjtiny-hello,my ds had bit of trouble with potty trainig,didnt even start till he was over 3 as he couldnt get hang of it still not great and in nappies at night and he will be 4 in dec. he has eds and suffers badly with back pain so not sure if thats a factor. dd1 was trained very early though before 2 and she has eds but it seems to affect her legs the most. hypermobility can affect bowels so maybe its same with bladder.

rtb4-seems so unfair that they couldnt at least see your ds-he may well be a 'complicated' case but surely that makes it more important he is seen?? id have thought theyd at least seen him for an assessment and some interim care whilst you got the chromosome tests done etc it seems wrong tot. st leave you waiting and with no help or support.

sorry last bit meant to say 'it seems wrong to just leave you waiting' computer playing up today!

Hi ellie

yes ds struggled with potty training he was 4 before was dry though he still does have accidents if you don't remind him to go and often soils himself found out recetley that's it's the eds as can affect the bowel and bladder control to (was because I had xray for something else and bowel was stretched they thought had obstruction but by chance the orthopeadic reg I saw knew fair amount about eds and alerted ne to it and we discussed ds3 ) he is not dry at night been told that's because when relaxed he goes floppy often poohs in the night.should add ds is 5.3

And yes soy ds like your another one with family gentic. Link

ariane

I hopes he would to but was told that they can't be sure what's causing what yes the eds is defintley affecting him quite severley but there not sure if cp making it worse or the verbal oral dyspraxia making the hypermoblity in his jaw seem more worse. Or if the underlying chromosome issue is causing some if the problems so there going to do nothing !!!!

Am going yo try Harrow but have had this issue before that drs won't deal as has wrong dx or not the right ones for them .so yet again I have to mange all myself yet with no medical training

Ds sees, cleft lip and palate due to palate shape ,physio and ot both who know bugger all about eds , neurology for epilepsy ,orthopeadics over 2 hospitals ,orthitcs ,ent as they discovered he has some hearing loss and genetics now from gosh just wish someone would take ultimate responsorablity for him .Local paed is useless

eds clinic at kennedy galton centre northwick park specialises in getting the correct dx/eds type to begin with so they might be of some help for you i really hope so i know how difficult all this is.

i can sympathise with your ds over the jaw prob-mine was a constant source of discomfort as a child and used to dislocate a lot it wasnt nice.

we seem to have about a million diff doctors for various things physio/cardiac/neurology for migraines/dietician and its such a pain when even though they know i struggle getting around but still wont have kids seen in same clinics on same day to make life a bit easier for me!

Will try them though suspect they won't take referals from out of area .Gp is crap at doing any referals to am wondering if can scrape money together to least see someone private first to get into the system

Yep we have same problem differnt drsdiffernt clinics and differnt hospitals !!

Would rather be under one hospital like gosh so less chance of notes not getting passed on

we are under gosh but still have to go to diff hosps, see rheum,physio and cardiac at gosh, physio at local hosp as well for dd1 and ds for things like hydrotherapy etc and the allergy clinics migraine clinic etc etc at diff hosps that run them.its really a nightmare i think it depends on what hosps do what-was lucky with eds specialist clinic at n park as i live in harrow and its only one bus ride away with stop right by my house but the other hosps are not so easy to get to.

i hope you do get a referral ,i had to go down private route when ds was a baby as he was really unwell my gp was useless kept giving him antibiotics he got so ill and in the end i got my dad to drive me to the local private hosp, got him seen and then referred back to the nhs as doctor he saw worked for both priv and nhs-wasnt eds prob though the whole of his scalp had become a festeriung infected sore they kept treating him for impetigo and in the end turned out to be something diff after million bld tests(eoisinophilic pustular folliculitis!??) caused by his allergies.
cost a fortune to get it sorted but was really really worth it.gp was furious though that i hadnt accepted their diagnosis.

Yeah my gp or ds paed won't luke it was big row over the orthtics being private which meant ds was left without anything while I waited see nhs just to shut them up but she put physio paed in their place agreed with private and agreed that I'm best staying their with them for better waiting times ie none

Am at addenbrooks with ds3 today then back again their for ds2 tomorrow Friday is ot but inbetween going to try chasing down who can see private fit intial consultation

good luck at hosp today hope it goes well

How is everyone doing?

Ds struggling bit with cold and damp but ok

and good news I'm finally walking without crutches

Hi guys

I haven't caught up yet, I will read all your messages tomorrow. I finally managed to get away with the dc for the first time in nearly four years, so we went over half term.

Yeah for the lack of crutches! We have had an ok time painwise for ds, had his first clinical psychology appointment....without him, just dh and me....will let you know how it went.

Am frantically doing paperwork for dla, updating risk assessments etc, chasing apppointments etc. Ds is shattered at the moment, too tired for physio which is really painful at the moment.

Posting some more good news have just seenocal orthpeadics who was suprised that we been refused by gosh and she is going to call him and dicuss ds with him as she reckons he is not getting full picture of just how much the eds affects him taking the other stuff out the picture she's pushing for him to be seen even if it's outside the direct clinic so maybe joint appointment with neurology

Posting some more good news have just seenocal orthpeadics who was suprised that we been refused by gosh and she is going to call him and dicuss ds with him as she reckons he is not getting full picture of just how much the eds affects him taking the other stuff out the picture she's pushing for him to be seen even if it's outside the direct clinic so maybe joint appointment with neurology

Opps so pleased posted it twice

Right I am caught up on everyone's news....on the whole not good news all round though!

I am so frustrated on your behalf rtb4, I can not believe that you can have been dismissed like like by Prof Grahame, even the top doctors seem to forget that they are dealing with little human beings who all have different and complicated`needs. I would have thought it would be quite easy for him to identify which elements of your ds's medical conditions are purely related to eds, which are influenced by it and which have nothing to do with it. I know you can do that!!!!! I have my fingers crossed that local orthopaedics manage to reason with him, and the clinic as a whole.

We go to one hospital for all bits, until the referral to a new orthopaedic surgeon comes though anyway. But our hospital is actually made up of four different hospitals some in different parts of Stoke, none of which I can get to easily, certainly not without the car. They do have a united computerised record system, but guess what they either never look at the records, don't keep them up to date anyway or lose them on the computer system! I felt like offering my copies of ds's records when they wasted all that time looking for them the last time he went into a and e. How can you lose computer records when they have his dob, hospital id number and nhs number! We also have no one really taking control of ds's case, except me, that it what got me so worked up over the summer, none of the doctors talk to each other, or me come to that.

When we saw the clincial pyschologist she suggested a multidisciplinary meeting, I just laughed and said good luck with that!

Hi Ellie, and welcome. My ds was difficult to toilet train too. He was not dry until he was 5.5. He is 7 now, but we still have urinary problems, accidents, last minute rushes etc, but he did get there. His sister was dry day and night before him and she is over 2 years younger!

How are you all doing Ariane?

All gone a bit quiet from you guys over the last few days, so I am guessing that you are not having a time.

Any good news re Prof Grahame peasantgrtb4?

Hope you all ok.

I am finalising the dla form today, going through it with class teacher after school. Head, GP etc on side so will be fingers crossed. Ds is having a bad week with his neck this week, thought I was going to have to cut his pj top off him this morning, as neck so sore I couldn't get it over his head. Poor kid. He asked me last night if he will be paralysed if his neck dislocates again, as he has done more learning about the spinal cord in school.
A friend into alternative therapy suggested reflexology for pain management, does anyone have any experience of it?

yes having a hard week-really busy and tired! ds had 2 hours crying in agony today with back pain and then slept for rest of day so wont go to bed now.

i cant wait till the weekend i really need a rest!

hope you are all doing ok

Hi sparkel no nothing yet but the orthopeadic we saw phoned and said shes had chat with him and is sending him soem reports over and he is reconsidering but shwe said if i not heard within next 2-3 weeks to give her a call and she will chase him

sorry about ds neck , what painkillers does he take and Ariane what painkillers has ds got to am just wondering as ds has been started on some strong ones to see if that helps him

Good luck with the dla it has made a huge differnace to us

We saw physio today ds complaing of pain and shes like well if you dont encourage him to keep going when has pain not going get any stronger ..Yet if another child was crying in pain and a mum said stop it just get on with it ss soon be called

Prof grahame said to me when he diagnosed me that pain was an indicator of the body being stressed too far, and they very thing you should never do it push through the pain, you should always stop. His article on pain and hypermobility says eds sufferers often have a poor preconception of pain, and that is how they do so much damage. Your physio is awful, can you give her some reading material...does she have a supervisor that you could contact, her advice if you were to follow it would do way more harm than good...I am so cross for you.

My ds is just taking ibruprofen and paracetamol, albeit at higher doses than your standard calpol comes in. He only has codine in hospital, we have been able to avoid morphine so far, although it has been a close thing.

Has your ds gone to sleep yet Ariane..hope so.

Have poured myself a second large glass of wine tonight, and it is only a thursday...shocking

why I want to see him our physio feels that well course he has pain but he has to just get on with it if you dont push him he will neve rbuild up strength , kinda harsh he is 5 .and her supervisor seem be of the same thing as is the community paed ther elike well hypermoblity does caus emild aches , fecking hell mild it was enough to stop him walking hypermoblity is not a mild problem for him

But fingers crossed he will see Proffesor Graham get some proper input I hope

yep hope you got your head down to Ariane Im about to go to bed been awake since 3,45 and am pooped

yes just gone to sleep, he just has nurofen and paracetamol for the pain nobody has ever offered anything stronger i didnt know if that was due to his age? he is 3.
he keeps waking up in night with pins and needles in his feet and is more restless and fidgety than ever.

regarding the reflexology-i have had it a few times myself it was very relaxing but a few times i had to ask the lady to be a bit gentler as some of the things she did made my toes feel like they were being pulled out of the sockets and were making horrible clicking noises! apart from that it was fine i didnt notice a vast improvement but it helped with stress levels and i think being stressed and tense doesnt help muscles and makes them hurt more so in that respect it was helpful

Hope you both got some decent sleep last night. Ds was up early this morning with neck pain, and aching legs and feet and tingling down left side of body.

I don't like the idea of reflexology pulling at his joints....he is not confident enough to tell someone not to do that, so may be that is out as an option.

hmm reflexology should not be pulling at any joints its all meant to be done on the feet its all about pressure points and engery and relaxation

Ariane there ar eother drugs but they dont like to use to often , might be worth contacing your paed to discuss with them ,

ds is now complaing of back pain along with knee pain so not sure what to do guess just hope that we do get the referal as physio said well he has get used to it i what happens when hes working hard using the muscles it should get better

Have completed the dla form, photocopying it tomorrow and posting it off to them! Combination of feeling terrified about it, upset about it and feeling celebratory for at least finishing it! Class teacher for ds is talking about ds needing a laptop in order to continue being able to learn effectively, so new battle starts here getting funding for that...anybody know if there is national funding for laptops?
Hope you are doing ok, pain is still the name of the game for ds, I wonder if he is having another growth spurt?

How are you all doing? rtb4 any news from Prof Grahame yet?

hi sparkle hows ds been

. nope not heard anything but figure going to take time , though have found out possiable to see him privatley so may well consider after xmas if get referal and is to long

Good luck with the dla it really does make a differance

Araiane hope dc and you are feeling ok