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.

should read breadsticks.....sugar rush prevents good typing!

Lol at sugar rush I need some on bases that offing am in danger of falling asleep and ds3 of today so can't even grab a hour

Because he has transport and apponments at 3 means he has whole day of :(

Going to take ds and dd1 out of school on thursday pm for ds appointment. Have asked my mum to come to have both dd's at my house during the appointment, but dd1 gets so worked up when she knows ds is at the hospital that she sobbed when i told ds we had an appointment. Goint to tell school she is going to Grandma's as have no other child care avaible for afterschool, and psychologically needs careful handling in respect of ds.

Yeah ds1 is of Friday to due to physio his attendence will be pits that's without any sick days that I'm sure will have over the winter

I'm hoping today that he will least discuss ds with proffesor Graham at gosh and luckily in east Herts so if can get him seen there it's not to far to travel in

I hope it is going ok, am thinking of you

Well definte dx of Eds given today for me and ds3 he said highly likely rest of dc to but as not there could not give ,He was going to talk to professor Graham as it looks like ds3 has vascular type :(

But has also said professor Graham might want to see all of us as be intrested in fact that it seems such strong gene in the family swear genetics mouth was watering when realised it as was fascinated that at 37 and good few stones heavier than I should be I scored a 8 still on the scale

but he also said does not account for all ds issues and with his features etc he feels that is like to be a chromosome deletion to so is carrying out chromosome tests. As well

Oh and xh did not turn up at all :( but then was not suprised but did mange find picture of xh

Dr said oh he does not look like his dad does he I just grinned could kissed him at that point lol

hello,hope you are all ok today. i have been so so busy the last few days that havnt even had time to turn my computer on! but dd and ds have physio appt today so i didnt have to be up at 6am and out of house by 7am so i could catch up!

ds has been completely exhausted and keeps falling asleep during the day especially after pre school and he is covered in bruises where he says he has bumped himself or fallen off the little bikes at pre school which makes me panic as i am so worried he will damage his back badly and although i have told them in great detail about all the problems i am still a bit worried about sending him, we had major probs last year when he started due to his allergies i thought i had explained how severe they were but then they tried to give him a carton of milk and i had to launch myself across room to take it off him.

Sparkle-i too seem to spend the day waiting for phone calls from school/pre school as i worry all day that dd will be unwell last week my battery went on my phone and had no charger i was nearly in tears panicking had to go and spend 20 pounds on a new charger to keep at my mums as i couldnt bear it if anything happened and the school couldnt have got hold of me,it made me realise how on edge we must all be as if we can never ever relax 'just in case' anything happens.my life seems to be a constant round of hospital appts, risk assessing everything me or kids do and either being in pain or seeing my kids in pain, i think thats why i reach for the chocolate biscuits at least, quite a lot of comfort eating goes on at my house in the evening, a combination of stress and loneliness i think! once the kids are finally in bed i seem to dwell on things a bit too much and feel sorry for myself.

Ariane same here Internet is my lifeline but tree came down yesterday took out our lines so all have is phone and 3g

Ariane - I think we are living the same life.....nice to not be alone I am trying hard to avoid the comfort food today, but there is a certain inevitability about it

Rtb4, wow good to get a final dx, but vascular type! Mind you Prof Grahame was definite with me that it could not jump type and if I had hypermobile type then that is all the children could get from me. I suppose there is always a chance it could have mutated? Do you have any of the vascular type symptoms, apart from the hypermobility? Are you going to see Prof Grahame now, or at least go to one of the hypermobility clinics at GOSH or UCHL? Not a reassuring dx to get, I hope you are all right thinking of you.

Dd has some symptoms that cannpoint towards vascular type to dr was intrested in pictures of veins on her arms where you can see they have broke and bled but have been hidden by her other genectic stuff going on.Dd has 2 other genetic condtions that are not linked to this one ( did not find out till she was 3 after spending least half her life in and out hospital butvwith treatment is doing well and is nt bar medical

yes never linked it but I have had a major bleed when artery ruptured in surgery

He's going to talk to professor Graham and any luck ge can do direct referal if not gp/paed when letters done but said we will all be seen by genetics and clinic .He wants blood sample from all of us so can look see if thee is a gene etc for research purpose

Trouble is the feeling with ds3 there's more stuff underlying and results of chromosome stuff could take

3-9 months Sigh do dx one hand and queary with the

other .

Oh and diets not efen got started here ,thigh,hip to sore so biscuits win

Does sound like you all could have vascular type then...such a worry I am so sorry Have they developed a genetic test for vascular type yet I can't remember? I wonder if they are going to do ECG's and EKG's on your hearts etc, I have had both of those, and an MRI to rule out vascular type, but I have a nagging feeling there is a genetic test now.....
I bet you do get accepted to see Prof Grahame, it is such a strong gene in your family....a double whammy from you and xh perhaps...although it shouldn't work like that should it?!

I am sending you lots of chocolate and biscuits, chocolate is a natural pain killer I am sure, well it works for me anyway.

Ariane schools and allergies are nightmares

ds3 like your is very tired to,

Can i ask from Adult point of view what you do when pain is bad yourself I'm taking regular nurofen and paracetomol with codeine and it's still very painfull lying Down is best walking is doable but sitting hurts and moving one postion to other hurts .I tend to have high pain threshold to onlyneeded paracetmol after csection for 24 hrs then nothing but this is dam right miserable

Sparkle sadly have to say that Im one to blame for passing this to dc as I'm the common link ds1 and ds2 are mine from differnt realtionship to ds3 and dd. Already felt like shit because gave dd the dodgey genes that affect her health ,now I given them this :(

I would love to send you all the positive messages about not thinking like that rtb4, but I have not come to terms with it myself yet. I feel the same, it is my fault that ds is in the position he is in. I feel shit about it too, dh says I must not feel like that, I had no choice about the genes I handed on, any more than I had a choice about the genes I received. I know this to be true, but to be honest it falls on deaf ears for me, it is just a guilt and responsibility I will carry with me forever and which I will never forgive myself for. Sorry, not very supportive

You know ds has food allergies too, makes you wonder what else is connected doesn't it.

For my pain relief, I can't take any NSAIDs as I developed and anaphylactic reaction to all of them in my early 20's. I can only take paracetamol and codeine, it doesn't really work, perhaps takes the edge off, and I had 3 babies with no pain relief too, so I guess it is just that the eds pain is very debilitating. Bending is very painful for my knees, I can not get up from a chair without being bent over in pain for the first few metres, and gradually straightening. I am generally all right in bed, but I can't do "lie ins" as the pain in my hips and back becomes too great to stay lying down after about 8 hours, mind you 8 hours with the kids is a good night

I find chocolate helps though

Found out today according to US website I had not found before ehlersdanlosnetwork.org/hypermobility.html that my Neurally Mediated Hypotension (high pulse for me resting is 95 to 100) and low blood pressure 100 to 90/60 to 50 being normal for me) is another symptom of EDS hypermobile type.

Bumped into GP today (went to the surgery as my dd1 has picked up ringworm from someone at school!) he tells me that he has already received a letter from the Orthopaedic Surgeons, "strongly supporting" and "urgent referral" to GOSH....guess they can't wait to get my ds off their desks....well works for me. Just have to get my mind in gear for the Paed Rheumatologist appointment on Thursday.

Ah see I have the low blood pressure but my resting pulse is low which was quite a eyeopner at gym when joined and had medical lol it was better than the superfits instructors

Had phonecall that orthopeadics at Addembrooks want to see ds3 on 22nd of this month

I'm fed up juggling hospital appoinments and hospitals we have ,7 differnt hospitals involved with his care and double that at least probably triple with differnt Drs /departments
Just wish we could be under one team then messages notes etc might not get lost changed between hospitals

ds3 has not done full week at school yet and not going to for the next 6 weeks or so

I'm forgetting what life is can't plan anything :(

Ah guess what I'll be asking orthopeadics for when we go hoping that along with genetics will be shove to get the referal that's needed

do any of you know if there's anyone who has knowledge of Eds at addenbrooks

hope everyone else is doing ok

rtb4
I was first seen at Addenbrookes when I was at Uni there, and dx as having BJHS by Dr AJ Crisp. At the time I was very reassured and pleased by his diagnosis, but looking back now on his report to me and gp he got a lot of it wrong, not the dx but the management. Having said that it was 20 years ago (glug....self-conscious shuffling of birth certificate) and knowledge about eds and management has moved on a lot. I just went to Addenbrooke's website to see if he was still there he is, here is the full list of the consultants they list for the department of Rheumatology and there specialisms :

Dr A J Crisp: Metabolic bone disease, metabolic rheumatology, reflex sympathetic dystrophy

Professor Gaston: Ankylosing spondylitis, other spondyloarthropathies

Dr F C Hall: Connective tissue diseases, vasculitis

Dr J R Jenner: Sports and exercise medicine, back pain, peripheral nerve lesions, EMGs

Dr M Lillicrap: Medical education

Dr A Östör: Early inflammatory arthritis, biological therapy clinical trials in rheumatoid arthritis, upper limb disorders (especially shoulders)

Dr N Shenker: Complex regional pain syndromes/reflex sympathetic dystrophy

Dr C Speed: Soft tissue rheumatology, sports injury (01223 596235)

From this I would say that Dr FC Hall is your best bet to actually know about EDS, I never met him, maybe someone else here has. I hope that helps some.

Bad day today, ds in tears at school, apparently one of his two teachers (job share) shouted at him last week for going back to the classroom at playtime. He went back to collect his neck brace which he had left by mistake. Now he doesn't want to go to school, wear his collar, be different from everyone else, be alive...(all comments this morning) I know they have rules, I was a teacher and I respect them for that, but really....shouting at a disabled child for returning to the class to collect his possibly life saving equipment.....there may be 32 kids in the class but shouldn't it be the teacher's responsbility to check that my 7 year old ds has remembered his collar in the first place. Sorry rant over, going to get tissues and cry into a cup of tea...and maybe a biscuit ....damn diets

rtb4 I should say that the initial dx of BJHS for me at the time was appropriate, the scale and way my EDS developed over my late teens and twenties would have supported that. It was changed to EDS by Prof Grahame about 4 years later. I started with the extreme symptoms much later than most, and much much later than my ds has. I don't think Dr Crisp got the dx wrong at the time, so if you see him, don't be put off by my description of that experience.

rtb4 i actually find it quite hard to manage my own pain its usually just a case of nurofen or paracetamol which never really take it away completely, i do have co dydramol when its really bad but i try not too take it too much. I had ultrasound on my arm the other day, the physio said it would reduce inflammation around the tendons and nerves that i damaged in my arm iam going again in couple of days i will let you know if it has an effect, i think really rest would be the best thing but i never get the chance so keep hurting the same places over and over again and i get frustrated when the doctor says rest! i really cant as have 3 kids, live on my own, dont drive and have too much to do!I have wrist splints which really help me to manage to push the double buggy but i think its more a case that i am having to just learn to cope with the pain day to day maybe i will just get used to it as to be honest even in bed at night i never sleep well and have about a million pillows trying to get comfy so hips and back dontache next day. its very hard to deal with .really sorry about ur dx vasc eds am thinking of you.i always worried about the vascular type for my daughter as she has very prominent veins and was born with a funny mark on her cheek and lower jaw which faded and now is a collection of broken veins all right under surface of her skin,all 3 also have broken veins on back of their necks as well but doctors have said it hyp type eds and i suppose they know what they are looking for so i dont need to worry do i?

Ds has appointment for mri scan on 6 october under general so i am a bit worried about that due to his allergies iam terrified he will react to the anaesthetic but i suppose its something that really needs doing as his back pain has been bad last few days.dd has painful legs at moment which is a shame as we have managed to walk the 3 mins to bus stop the last 2 days but i feel like things have gone backwards a bit now due to her being in pain so its a taxi today instead which is why i had an extra bit of time to go on computer today!

hope you all have a good day or at least the best possible day you can do given all our circumstances! take care i will be back on soon as i get a minute maybe later or early tomorrow again

Rheumatologist appointment today for ds.....we will see....

I hate this, I hate this I hate this...and I am not sure that I have the capacity to go on anymore. Can't find answers, can't find medics who have any experience, can't find the will to carry on. Can't cope.

sparkle-you poor thing i know exactly how you feel, it is so so hard i know and some days i feel like just giving up so i understand your frustration and how exhausting it can be when you are desperate for the help and support you so badly need and yet nobody seems to be able to give it to you.
It is hard to make doctors and physios understand sometimes and it is hard to see your kids in pain i know but you have to keep going and i dont say that lightly as i know myself that its easier said than done. there are always going to be bad days i sometimes cry and cry and get angry even with myself thinking i have inflicted it on my kids but it isnt our fault.It is a sad fact that for some reason eds doesnt seem very well known among the very people who should be able to help-the doctors themselves, so we end up having to be the experts and thats hard as i find that i used to look to them for information, support, answers and treatment but when it didnt happen it became my burden to go begging and looking for the help myself and having to know what to ask for as clearly they hadnt got a clue what help to offer.

From everything you have posted i can tell you are obviously a wonderful caring and devoted mother who, like the rest of us has to deal with a lot of problems, we all understand and we are all here for you. Our kids are the reason we are all writing on here and within your kids you will see the reason and the will to carry on.Sometimes it does feel like you just cant do it anymore, like you have exhausted every avenue and dont know where to turn for help but iam sure things will get better it just takes perseverence.

Iam thinking of you, take care xx

Sparkle it's not your fault not at all and your doing everything you can for your ds that's all we can do and we can share knowledge and help ourselves so we can teach the proffesionals

Though not at my best either I gave up called duty dr and got instructed that I can double the recommends dose if ibruptofen on top of the dhydromol what's on the box pain, is through the roof took me 30 mins to get oft couch

This is pretty rough tonight :( it's given me a real horriable insight what it's like for ds3 and want to cry with the knowledge that he pretty much lives like this been all he has ever known

think we could all do a gosh meet up I'm determined that ds will be seem there physio etc fed up of fractured service and no one knowing anything feck think I'm going to insist they switch all ds card for this and his other problems