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.

afternoon ladies.

quick question, as some know, my dd's 1 (10yrs old ) +4 (2yrs old) have hypermobility. our ds is now 2 weeks old. are his thumbs meant to be able to move so freely they look dislocated? [worried] he has dh long fingers, long toes and long legs despite weighing so little. (25th for weight, 75th for height already)

dh tells me not to be so silly.

my dd2 is 13mths old and has this prob and has dislocated thumb once.ds does too and has dis 3 times

pic of ds thumb

yes, it does look like my dd and ds thumbs, just try to be really careful putting cardigans/coats on him as thats how dd thumb dislocated bent back in her snowsuit.try not to worry

Thanks everyone. DS3 has put on a little bit of weight so we get the day off from the hospital and weigh again on saturday. If weight is good then we can be discharged and go back to the community midwives. We saw the paed and she said that if DS3 does have EDS then it doesn't look like it will be as bad as DS2 but that we can ring her if we have any concerns about him. Then we saw the physio and DS2 got his kaye walker. He loves it and has been playing football with DS1 in the garden, something I thought he would never be able to do.

misdee - your ds's thumb looks just like mine and I have hypermobility but only mildly

I'm so pleased he is putting on weight ellie really am

Hi acer

Ds luckily does not mind the appointments but lol I do am fed up treking to all the appointments. The good news ds has found way to get himself into school taxi without being lifted unconvential he gets one knee in then hold on to doo them pulls himself in on his knees then repeats to get into car seat.Though it does mean that he arrives at school with dirty knees lol

Hi acer, I am sorry to hear you are struggling for a dx. Having one does help, well it did me, although now we just wait for conclusive management programme, same goal posts just shifted slightly! When do you expect to hear from GOSH?

Ellie, this is really good news, I have my fingers crossed

Misdee - It looks suspiciously hypermonbile to me, unfortunately. Certainly more hypermobile than any of my dc were. It is early days though for any kind of dx, I would keep an eye on it, and watch out for coat and jumper sleeves, as ariane suggested But I would raise your concerns with GP when you go it, start getting it logged, if it turns out to be nothing then no harm no foul. Very cute lickle baby hands too - enough to make me broody....oh no over it now at thoughts of even more sleepness nights

grtb4 - heh good news about the independence of getting in to the taxi for school. How is the other issue going?

Well phsyio bullocked sw so thats sorted but we cant get referal for love or money to the Eds clinic not till local feel they exhauseted all their options

I made mistake trying bring ds3 home without wheelchair to proove a point and well lets say my back is bad from carrying him.I dont care what they say when i have do that jorney with him next week im taking his wheelchair

think even physio is agreeing that the moblity he has is as good as its going to ever get.Which means what takes us 5 minutes will take ds 25 and then thats his limit reached for teh day and then means he gets pain in the night

He is so game to try but you can watch him and he gets slower and slower

Interesting LA authority seem to be taking my complaint re disability discrimination quite seriously today.....I wonder why?

Hi all, how is everyone today?

Dd is thankfully seeing the musculoskeletal physio on Fri. Her elbows are usually fine, one of the few joints on her that is OK. Well, not now. Both have popped badly in the last couple of weeks, most recently her right one and she is right handed. She was measured at her recent visit to the orthopaedic surgeon, and she is just over 141cm tall at age 7. Shoe size is now a ladies size 6!

Misdee, just to add about the bendy thumb problems - watch when he's writing because my dd bends her fingers backwards and needs to use grips from the OT.

hello, hope everybody is ok.sorry to hear about your dd elbows deepbreath i hope the appt on fri helps or that maybe they can suggest some physio for her. my ds has problems with his elbows they bend the 'wrong' way they are so hypermobile and he always says that they 'make a noise and hurt'.

we are having yet another horrendous week, all 3 dc unwell AGAIN with nasty virus (temp, sore throat) ds also has uti and iam exhausted and in terrible pain with my arms, the gp has referred me to see rheumatologist with a view to having steroid injections into the joint as i have not been able to rest my arms so they said theres not much else they can do, iam still not sure though as really hate needles and it doesnt sound pleasant, but if it helps maybe its worth it?

I am really struggling with the school run lately so even though its horrible everybody is unwell at least i dont have to do it for a couple of days! it is a real nightmare trying to get dd1 and ds up early when they are tired and achy and to get physio done and out the house on time. I cant wait to start driving lessons it will make such a difference, sometimes its even worse at weekends/holidays as iam completely stuck in the house as dd1 wont walk far and have a double buggy for ds and dd2 so am limited how far i can go by that too and i get so miserable stuck in the house. Being able to drive will make thingsd so much better, at the moment thats what im concentrating on as the thought of my life staying like this and feeling so isolated terrifies me.

Thanks Ariane, horrible week you're having there Hope everyone gets over that bug soon.

I know a young girl that has been having steroid injections for her joints, she has Marfans like my dd. The injections have given her some pain relief for around 3 months or so, but didn't completely stop the pain - think she was still having to take some of her tablets too.

Hope you can start those driving lessons soon. Know what a difference it can make being able to get out and about - although I passed my test and we have dd's Motability car, I have times that I am not well enough to drive.

Ug bad week hope gets better Ariane and yes I'm waiting on my provisonal to come through do CSM start driving will give us much more freedom

deepbreath sorry that her elbows now causing problems.May be picking your brains there checking ds2 for marfans syndrome which came out of blue was his gastro that wants it checking he is hypermobile but other than handwriting not a problem but he has some other stuff going on bowel wise and they picked up a heart mumur and looks wise he is very tall ,slender and arm span is long (he's 5,11 and size 11 shoe not 14 yet)

sparkle hope your complaint reaches right people and they do something

We tried a experiment the other day what takes dc his age to walk in 5 minutes took ds3 25 minutes .He is very game and kept going but got slower slower and that was his limit he could not walk anymore and had ne up in the night with pain

His pace is just so slow and tone so bad .Indoors he's ok as can sit down inbetween

Physio been very honest and am getting my head round the fact he will always need a wheelchair and that if his hips knees don't improve that it could even get worse

But still no referal clinic turned us down till genetics results as if he has gentic/chromosome problem then most will be put down to that .They only see dc with hypermoblity/eds

So first results are due in March then if they find anything they need carry out more tests

Stupid stupid stupid grtb4 that you have got turned down for referral depending on genetic testing. I am not sure what results to hope for you for. Is the physio being supportive?

Had my breast surgery on monday, so flat on my back at the moment, fingers crossed that ds doesn't do anything to himself over next few days.

Hope everyone is ok. [bsmile]

Turned down for dla.....on grounds that ds disability increases his care need but not enough, and his mobility is reduced but he is not at risk of falls......yes that is what they said....ds who falls constantly, is constantly hospitalised, and on bed rest for falling, but don't worry he is not at risk from falls.

Sparkle

appeal a lot of claims are turned down at first and swear they dont look at th evidence first time .I applied for ds3 we got turned down i asked them to look again and reconsider .

They did and awarded high rate moblity middle rate care and we had it renewed few months for another 3 years

Can you get hold of what the school report was ? as know you had ds teacher helping but be intresting see if they backed it up ditto his paed

yes physio seems to be more supportive now

Geneticw ise could be another 6 months from March if they find anything then .

Honest answer i would like them to be something that linked it all rather than have to face that hes been very very unlucky and has 7 dx all unconnected

oh and try taking it easy and make sure you rest so can recove

Personally I think a lot is linked by eds for your ds, but getting them to look at the whole child and the whole condition seems impossible, well it does for us at the moment.

I have requested that the dla send to us copies of all the reports they used in their decision making, so hopefully I will see if someone has said one thing to me, and written something else to the dla. I shall explode like a firework if that has happened. Think that them not reading the supporting evidence, or the form come to that is a distinct possibility, anything to stop spongers getting the money they are entitled to, any help

call them ask them toreconsider and then if still no then appeal .

Yes i think a lot can be explained by Eds but then he does have a lot of other funny stuff going on to and they feel the Eds and the muscle tone which despite lots pf physio is just not improving making them question it

Big foerhead , odd shaped head out of prportion body .Then some stuff going on inside bit of a puzzle .

But since noone seems to want to deal with it we have to wait so be at least 8 month sbefore they will even consider seeing him ( and screams )

How can a wait of 8 months achieve anything, I despair!

coming back to this thread after a long time off it, sorry if i missed anything, but saw it in active convos again and thought i would post

ds1 who is 12 and has a mild form of eds, briefly dislocated his shoulder yesterday afternoon at school, after an older boy accidentally bumped into him on their way to lessons

the boy did apologise, but ds for some reason didnt tell anyone, as it went back in immediately after, and he wasnt exactly sure what had happened

i picked him up at the end of the day a couple of hours after it had happened and knew straight away something was up, which he confirmed by bursting into tears as he was telling me, adding it was still v painful

when i got him home i checked him over, and there was no obvious difference to the other shoulder, and he could feel his fingers when i pinched them, so just put him in a sling and gave him painkillers overnight until i could get him seen this morning, where the gp confirmed it sounded like he had dislocated it, but luckily there had been no ligament damage

so he is out of the sling now and just on painkillers and hopefully back to school tomorrow

tbh i am not surprised it happened as i had multiple dislocations of my knee for years until i had it operated on, and ds2 had his thumb acccidentally dislocated by myself when i was cleaning his hands with a baby wipe last year , though once again it popped straight back in

it still makes me shudder when i think back, i can still hear the noise it made and the look on his face

not sure if there is any point i am trying to make, but i just felt the need to get it out, so to speak

lou I hope that your ds is feeling better today. It is horrible to know that something so innocuous can cause so much pain, and damage to the joints.

Genetics are in and theres no underlying chromsome abnormality .Gentic Dr still feels that theres something but that tests are not advanced enough to find it yet and said will relook in 3 or 4 years as he said in layman terms that 10 years ago they could only see the basic chromsomes and that things change fast in his world of science .Did feel was a bit of pating on the head with it all the words his world .

lol was so tempted to point out that my Best friend is a top level scientist in gentics field sadly not in this country though and not looking at human genes atm ( but thanks to him i ahve a pretty good indepth understanding of gentics

So as it stands ds has just been very very unlucky and has several condtions .He is going to talk to a collegue about ds seeing someone for possiable Eds ( though that wont explain some of his condtiosn) His colleague may want to do skin and muscle biopsies .

But no gurantte that there going to even see him at all still so back to waiting game and no further forward