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.

Hi ellie, do you think that the posture stuff in the buggy feels restrictive to your ds? Some of it does look uncomfortable, especially if he isn't used to sitting in that position.

My dd had a standard Maclaren Major with no additional support, but she only had that when she was 4. Prior to that, we were using a normal buggy... the physio was shocked when I wheeled dd in there with her knees touching her nose, and after she assessed dd she referred us to wheelchair services!

Dd's 7 now and has an Invacare Blade Plus wheelchair - the only additional kit they supplied us with was a cushion because dd is quite bony/slim and I think they were concerned about pressure sores. We also have a Breezi chair (like a Tripp Trapp) on loan from the O.T. to support dd at the table when eating/doing homework.

I think PALs is the way to go. I shall give them until Monday, then I shall ring consultants secretary and send the first shot across the bow, if I hear nothing by wednesday I shall contact PALs.

I had another bombshell tonight. Ds told me that on last three mondays the headteacher has removed his chair at lunchtime and made him sit on the floor, so he can use the chair for his star of the week table. Ds has to sit on a chair rather than the round stool lunch bench, it is in his risk assessment after a trip to a&e from school when he fell off a stool in ict. Picture this disabled child being only child in school required to sit on the floor at a lunch bench whilst rest of the school sits at the benches......discrimination, breach of risk assessment.....breach of health and safety, humiliation .........I am furious, livid, incandescent....I know it is minor but really are chairs rationed in school now!

Sorry about rant I know it is a little battle in amongst our big ones, but why does anybody think that my ds is not special enough or important enough that he is allowed a chair. He is only 7...... anger has turned to tears now, sorry

Sparkle, please don't apologise. That's terrible - it isn't that minor really when you think what could happen to your ds through something as simple as not being allowed to sit on his chair. Poor ds
Is there any way that the SENCO could sort it out, maybe put a sticker on the chair "for Sparkles' ds only- do not remove".

I had a bit of a barney with dd's teachers because they preferred the children to all sit the same, cross-legged on the floor, but dd's physio told her to either sit on a chair or side sit instead because she could sublux in so many places.
Dd has popped her knee before whilst sitting on the floor (teacher: "but it was only for a minute") and then couldn't get up again. I had to go into school to lift her myself and take her to the Dr's.

Take care, and hope school have at least sorted this out for you.

Deepbreath -I went in to see the Headteacher, he knew nothing about it, although the chair had been removed from my ds for Heads new stars of the week table. He was suitably horrifed and promised me it would never happen again. I have also talked to enough members of staff to ensure no-one should walk though that hall and ignore the fact that ds is on the floors.

So for you about your dd's teachers. Is it sorted now? Ds has a risk assessm,ent in school which lays out everything including how he sits on the carpet. Frankly "but it was only for a minute" needs a bit of a slap!

I am off back to bed now, to try and sleep, have been up with terrible sinus pain, brought me to tears andthat is saying something as like many of here I am quite used to pain!

hello,hope everybody is having an ok day today i have just been reading through all the posts as have been so busy i havnt had time to even turn computer on lately.

sparkle-hope you are feeling a bit better

iam ok still a bit down but just getting through day by day and hoping for the best.dd has been bit unhappy lately and tearful i think its a combination of it being so cold and her being so tired.

elliejtiny

Ds has support in his wheelchair and in class room chair they just ordered pelvic supports as he wobbles so much when sitting waiting on rep to come out and do

He has postual cusion for in wheelchair with pommel and dip in to stop him sliding

Hope everyody is doing ok and Sparkle hope you had some results abck about the breat .

Araine

Hope your feeling better and remember just one day at a time

All at home today, snowed in. The dc are having a great day! Biopsy next week, 7th Dec, so we will see what happens after that.

How are you doing Ariane. Hope the cold weather isn't getting you down, it is still a bit too soon for the anti deps to be working yet. Hang in there.

i think im ok now just very tired but feel a bit more positive that im trying to help myself.have decided that after xmas im going to do automatic driving lessons as one of my biggest struggles every day is getting around to appts school etc and dd is due corrective surgery next year so i will need to be able to drive.

heard from ex partner today hes going to hosp nxt week for knee op as they dislocate constantly he seems in a lot of pain and is struggling at work

Sparkle, I will keep everything crossed for you on the 7th.

RTB4, how are you all doing?

Ariane, learning to drive really helped me feel less stuck (I didn't pass my test til I was 28, I'm now nearly 36). It feels so much better to not have to rely on buses or other people to get around. I haven't tried an automatic but I know people that have swtiched to automatics and they say they wish they'd done it years ago.

If any of you have a minute, someone is asking about EDS/hypermobility on the Health board on here - I replied but although Marfans is similar it isn't the same.

Thanks everyone

I think it's the comfort thing, if I was made to sit in a dining chair with lumps of metal digging into my ribs I'd be yelling too. We've got a breezi for at home too, DS2 seems to find that more comfortable than the buggy. Hope everyone is doing ok and not suffering too much in the cold.

Deepbreath I found the thread you were refering to and have posted on it, I hope she answers because she sounds very scared, nit surprisingly. I told her she could find more people on here, between us we might be able to help her find out more.....

Hi Ellie - jolly cold, but still smiling, ds refuses to go out in snow which is fine by me

Thanks, Sparkle

Heh festive emoticons are here....

really cold here today and joy of joys ds and dd2 have been up all night with temperatures,runny noses and horrid coughs, it seems to be every other week now that they are all unwell despite having the healthiest diets ever and lots of fruit and veg!!

iam really starting to wonder if eds can somehow affect the immune system as they are constantly unwell or maybe it more the fact that their bodies are just working so hard to compensate for how the muscles/ligaments etc are so weak that it just exhausts them and makes them more susceptible to colds/infections? im at my wits end they are all always on antibiotics and dd2 behind with baby jabs due to having temps every time her appts come round.

on the plus side my wonderful mum has had dd1 for me all week so i dont have to do the nightmare school run in the snow as its just too cold for the younger 2 i dont know what id do without her and my sister, and of course all of you for all the support you give me

Ariane -Not sure it is immunosuppressing directly, but I see no reason why it can't be related to being run down by pain anyway making you/us/them more vulnerable to any infections. I know I get more ulcers for instance if I am going though a bout of bad pain. I am so glad your mum has been able to help. How is your exdp getting on with his knee op.....what are they actually going to do, shorten his ligaments?

We have been house bound for three days now, with the snow. No gritting of local roads, so I am terrifed about going out in the car to take dc to school, because of ds's neck! Feeling fed up and guilty about not facing the drive, not sure if I am doing the right thing, feeling unsupported by hospital medics and so in a vulnerable position in terms of critism from school. I haven't had any critism, but feeling paranoid. I have totally convinced myself that dla will come to nothing because Consultants are so rubbish and can't find their from their elbows anyway, as we all well know.
I have been home educating the children today, but it is not the same, they are missing out on xmas activities, nativity rehearsals etc. Whya oh why can someone who knows what they are doing actually give me advice on handling ds, how vulnerable his neck is now...anything really.
Ds just came into kitchen, door wide open and missed the doorway banging into the doorframe......only he can be that poorly coordinated! Sorry I am having a self indulgent outburst.

yes,they do seem to be terribly prone to catching absolutely everything and ds is so run down he has an eye infection now too its a nightmare in my house.

my ex has his knee op on 16 dec it was meant to be nxt week but he changed it, he isnt having tendons shortened as he had that done when he was 10yrs old and it didnt work i think he is having keyhole surgery of some sort as they dont want to do too much actual cutting as he heals badly.i feel ever so sorry for him his knees are dislocating 4-5 times every day he can barely walk/go up or down stairs etc apparently they advised him to change jobs but he has only ever done the one job so ive no idea what he will do.maybe i shouldnt get too involved i guess its not much to do with me anymore but i still care ever so much

hope your ds is ok after banging into doorframe, my dcs are badly co ordinated and forever banging into things i think its something called spatial awareness (not sure on spelling!) the physio said to me once that children with hypermobile joints sometimes are not very aware of where there body is and are very clumsy.
it must be hard not having the help and support you need are there any specialist units for eds near you i know there are 2 one in harrow nw london the other sheffield are you near either that you could get a referral?and you are not self indulgent its hard dealing with everything eds brings and i completely understand your frustration.take care

We are in staffordshire, which isn't really close to either place, but I would travel any distance to get him the care he needs. He dislocated his neck yesterday at school. I fought for an hour to get them to school in the morning as well. The staff who care for him at school were great as usual, but one of the ambulance drivers, and the main a&e doctor we saw were dreadful. When I got to school he was becoming less responsive, more floppy, in a lot of pain, he couldn't grip my fingers with either hand, he had numbness down one side of his body. We waited for the ambulance, they were difficult, but we got him on a back board and off to hospital. Then when he was examined by the doctor about an our later, he was back to his normal self, the bones had gone back into place. The doctor just looked at me like I was mad, and said "well it is not like he fell or anything, he is fine now". I sighed explained AGAIN that it doesn't have to be a traumatic injury for him to dislocate something, and packed up him to come back home. He was very miserable, in pain, feeling sick which is spinal pressure, but I didn't bother to take him back, what is the point. I am going to ring his rheumatologist on Monday and ask for an email address so I can write up what happened and actually get the consultants to talk to me, the a&e department will npot follow it up, they couldn't care less! I could scream and cry! Apparently his teachers went to the staff room after we left in the ambulance and had a good cry, they were so shocked by it, and they have seen him do this many times.

Ariane - I am sorry about your ex, of course you still care. I don't have any suggestions, from what I have read operations are notoriously unsuccessful in eds sufferers, the symptoms just return. I wonder if he has time to do the appropriate physio?
Lacking spatial awareness or kinesthetic awareness is exactly what my ds has, I do too to a lesser extend, his is quite profound!
What a positive step for you to learn to drive, it would make it easier for you to get around, could you get help with funding a car through the mobility schemes I wonder.

Thinking of you all.

sparkle iam so sorry to hear about your ds i really have found the eds specialist clinic at northwick park hospital absolutely brilliant you should really try to see if you can get a referral to them, even before the first appt you have to have a really long phone call where they go through absolutely everything with you etc etc they are brilliant.

it is so sad that the doctors dont seem to know what they are talking about i understand what you mean by dislocations happening after minimal trauma my ds can dislocate his thumb/fingers at the slightest thing and the other week dd2 had her thumb dislocated when i put her snowsuit on her, they do tend to 'pop' back in by themselves but they still get pain and swelling afterwards. i really cant believe that so many doctors either havnt heard of eds or are simply dismissive of it.

i had a look at the motability scheme cars and i would qualify for one so it makes sense to learn although the cost of lessons isnt covered, so am going to save a bit and try to sort it out and of course persuade my mum to babysit as time is as much an issue as finances for me!

my ex has tried physio but his knees are in such a state that when he tries to do it they just dislocate so i think an op is the only way, he's a stonemason so has a hard job involving lots of lifting etc so really he needs to get better if he can or he wont be able to work at all i do worry as he seems to be at breaking point,in a lot of pain every time i see him,he suffers with backache a lot too but i think its how hes walking because of his knees thats causing it.

hope everybody has a good day

Have you got a friend with a car, who could start you off, just go through the basics, so you don't have to pay for those lessons? Obviously when the road conditions have improved

only person i know who drives an automatic is my dad and my ex, my dad said it was too expensive to put me on his insurance as well and ex hasnt been driving long enough to give me lessons and he would be out of action for few weeks after op anyway.im hoping that if i start with an hour a week it might be ok and if i need more maybe try to do 2 hours a week.everybody has said that automatic is so much easier (i tried manual about 8 years ago and gave up as i just could not do it!)hopefully i will get the hang of it quickly as to be honest with things how they are now and dd1s chest op looming next year i desperately need to learn as i cant manage like this anymore.

oh and the ot at council phoned me yest iam getting a ramp installed mon! no more struggling with the very awkwardly placed steps up and down at the front door with a double buggy and wobbly children, it will be so nice not to hurt my arms every time i have to go in or out

That is good news, I am so glad that is going to happen for you, it will make such a difference to your quality of life, just to be able to get out of the front door more easily!

it seems like such a small thing just getting in and out of the house but its always a struggle and a pain so it will be nice to just be able to not worry about it

hi

Ariane imto learning todrive will make life so much easier

Sparkle how are you doing ?with your other worries hopefully ds will now not lose his chair

ellie waht about a starchair ds has this and its lot more comfy while still being supportive

Update on clinic referal its not going to happen , fecking stupid Gp said well im sure he be screaming in pain if was dislocating joints .I seen a child do it in front of me its agonythen went on to say never seen anyone with Hypermoblity do it .Ffs so how can she judge has anyone got any links to hypermoblity literature that can print of and shove up her arse.

so we just sit and carry on as we are.Waitin g on new splints as has been agreed that ds gait is detoriating fast yet menat to decrease wheelchair useage im like arghh how can i when he is getting slower and in mor epain while waiting on splints