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.

yes she has just a normal one i had to hire it though as she was really unwell last nov and wheelchair service had no appointments for 6 mths can u believe it!?! but i cant push her and a double buggy so at moment its stay in or get a taxi.i feel like iam on the verge of a breakdown, some days are ok and i start to think itll all be ok then we all seem to have bad day on same day and its awful. sorry just need to get it all out!

This is definitely the place to get it all out, we know how you feel! Do you have family or friends around who could stay at home with the other dc, and you go out with just one at a time? What have you done to your arm, because that really doesn't help?

I was having such a good day yesterday, then at 5 I had a phonecall from Ortho Surgeon's secretary, saying they have decided to cancel Friday's MRI (at three days notice before he has to be admitted) and they are sending him for a CT scan to check leg length instead. This is becasue last time they xrayed his spine, they did it standing up, moved him into an awkward position and because he is only 7 and tried so hard to stand still as they toldhim too, they took the xray and it looked wonky. That has now become that he has unequal leg length and curvature of the spine, neither of which he has. I requested that I speak to the ortho surg, he was not available, nor should I question his godlike status. Unfortunately GP is on holiday, locum was as much use as a chocolate teapot! Have to spend day today chasing Ortho Surg, Paed Rheumatologist to get MRI back, CT scan cancelled (NHS and NICE say CT scans should not be used on children as dangerous levels of radiation) and generally argue with them about their incompetence. Why, oh whyis everything a battle.

oh know and all prepartaion you had been doing , yes ds can not stand still even says unable to asses for scolarise due to constant change of postion and jurys out on wheather he has curved spine me thinks not

and yes i noticed they get all defensive when you want to change things im just sitting tight on harassing asking nicely about ortho appoinment till we at leats seen genetics

Have spoken to his physio this morning, she is tearing her hair out,nothing she can do as they will not talk to her or listen to her either. Rhumatologist is on holiday too this week, only thing I can do is to try and reason with the Registar for the Ortho Surg who is aparently ringing me under duress at lunchtime some point. MRI has already been cancelled I checked that!!!!! Arghhhh The level of their care does not border on incompetent, it is smack bang in the middle of incompetent. Physio suggested I threaten Ortho with making a complaint through PALS, and make one too. Another fight, not sure I have it in me.

Glad your physio is on your side ,ours is useless knows nothing about eds yet she agrees ds has hypermoblity syndrome scored him for it ,yet some of stuff she suggested I know is not good

She is fabm, trying really hard to help. Not sure she had any experience of eds before she met ds, but she has done her research to find out the best ways to help him, I think she is embarassed by wat ortho are dropping the ball. Think I might press for an ortho referral to GOSH now, have given these guys here the chance to sort things out, and they just keep missing the point. Still haven't heard from the registrar who is supposed to ring me, haven't heard from dh who was supposed to ring to find out how I was doing with all this, not sure which annoys and upsets me more.

roundthebend4 - All right spoken to registrar now, so MRI is off for now, probably to be reinstated later, CT scan is also off as I won't allow it. He did confirm they were only working from wonky xray, so they are arranging to see ds asap to examine him physically, and try and persuade me to their thinking....which they will not be able to do unless they have put in a lot more effort. I got an apology for poor communication, a promise to at least investigate into having a case meeting for all medical professionals....I won't hold my breathe for that though. I have threatened them with a formal complaint and sowed the seeds for a referral to GOSH ortho surg. He did admit that they had no interest in the hypermobility which has caused all this. The Physio has got another Paediactric Rheumalotogist watching out for his case, as she has contact with the ortho department. Poor child remains in limbo, we are none the wiser as to why he has the medical issues he has, or indeed how much we should be worried about them, because he confessed indireectly that they had no idea of what they were dealing with, and no-one in the department had ever dealt with anything like this before. Ho hum we battle on another day, next appointment to be organised with gp to keep him up to date, discuss GOSH issue and see both Rheum and Ortho consultants...have I missed anything else that I should be doing? You are my checks and balances!

PS Not enough wine in the world to take the stress out of this.

se ethe Mri could tell them about his back so 2 birds one stone an d is a lot more indeapth .

Yep i would push for the gosh orthos to be involved lot easier when all under one roof were juggling 5 or 6 hospitals so reports get lost etc

I now ask for report to be sent an dphotcaopy it and carry to others drs myself

and if the y have no intrest why on earth don t they refer you thats one thing that annoys me i get well hypermoblity doe snot cause problems as bad as this , im like get real maybe for 95% population but hello it does for our dc

does your ds have low muscle tone to?

Had very low muscle tone when he was a baby and toddler, but thankfully is now much better, gross motor skills are atrocious though. Fine motor skills don't seem to be affected at all. In some ways he is a weird mix of symptoms.

Am definitely going to go with pushing for referral to GOSH for ortho, have made an appointment with GP for next week to go through all that has happened. I will also definitely do your thing of getting a photocopy of the reports, and take them with me.

I guess we have gone backwards in getting ds the support he needs, that is the most frustrating thing. Have to gear myself up for arguments with school now.

I hurt my wrist and elbow lifting the double buggy up the step into my mums house, saw my gp who said that because i have eds and have recently had a baby my tendons are even more stretchy so have been damaged really easily, the thing is i cant rest as i have to keep going, have to push the buggy and look after the kids etc etc so it isnt getting any better, the physio said i could try splints on my wrists. I get as much help as i can from my mum but she has my sister at home with a disability too so some days she cant and my ex works long hours but tries to help out some evenings and at wkends if he can.its just all suddenly got a bit much !

Have you got some wrist splints? I have had them for years for cases just like you have described, I can push the buggy with them on, and they make world of difference, I can even manage to pick up the baby with them on too. Definitely worth getting some asap if you haven't already. Rubbish isn't it being told to rest something when you have to keep going for work or dc.... At moment we are postponing my much needed surgery for carpal tunnel syndrome in both wrists, because I can't manage to be out of action for 6 weeks.

Saw my gp yest he told me to phone physio today to get the splints, i hope they do help as once term starts again i seem to spend my life pushing buggy to school, pre school appts etc and if they help itll be brilliant as at the moment im almost housebound. You are right it is rubbish being told to rest when you cant i still get the 'sleep when the baby naps' from my hv! even though she knows my other two have all the problems they have! its hard to find people who really understand.Its a ashame you have to postpone your surgery but i understand what you mean 6 weeks is a long time to be out of action.its so hard isnt it just coping day to day .

It really is, you sound rerally sdown about it all, have you tried any avenues to get more help and support in real life? I say this knowing I am really down, and have not done anything productive about it, except MN!

Im at a loss of what to do that will help ! The medical support is there dd1 and ds are seen at gosh and local hosp for weekly physio/hydro and we are all seen by local genetic dept and have seen prof grahame so i cant say i dont have the medical support its more just the endless worry about them hurting themselves i feel like i have to risk assess every activity they do because they might dislocate. I think i was coping ok when i wasnt in so much pain as its all got on top of me since hurting my arm plus theres the added worry of dd2 coming up for all same difficulties (my ex has eds too and she already has same symptoms my other 2 had at same age).some days are ok and im glad of all the medical input but sometimes there are 3 appts on one day and i dread dragging them all out everything is just so hard. sorry you probably think iam moaning esp when you are trying so hard to get more help from doctors etc and here iam saying its too much for me going to all the appts

well i mentioed eds to the physio and first thing she said well ds does not have overley stretchy skin .did not even know about any of the classfications so she instantly dismissed it and probably chalked up a smums questioning things again

She is also questioning ds afos , they was orginally prescibed by nhs but went private for second opion and to then get them made due to wait times

Clinic still says ds needs and i agree there world reknown but now i got to see nhs orthtics as the nhs physio want their opions

I don't think you are moaning at all, I fully appreciate how frustrating the whole thing is. We have a physio, rheumatologist, orthotics, orthopaedic surgeons, paediatric A&E consultant, Consultant Radiographer, as well as GP, unfortunately no-one except Physio and GP has a blinking clue what they are doing, and they at least are honest enough to admit when they have reached the extent of their knowledge! We also have the range of appointments you have and days and weeks when it feels like one appointment after another but I come out of each one knowing no more, and with no-one making any decisions or taking responsibility. I have written with school a health plan and series of risk assessments, but not one medical professional will tell me if we are on the right track with them....they just don't know! Ds is in pain a lot, particularly with his neck and it is that that really frightens me. Sorry today has been a bad day for him, he has had to wear his rigid neck brace all day.

Roundthebend4 - weird isn't it your physio wants advice from orthotics, our orthotics won't make any decisions, they need the physio to tell them what is needed. I guess every Trust is different?

Was it an NHS clinic that agreed with need, or private clinic?

Why oh why can medics not talk to each other.

in first place ds was refered by nhs and orthtics said yes he needs afos .but we got made private due to waiting times . but only after their specialist had spoke to nhs and formed his own opion

But now moved first nhs physio we saw was liek yes there helping , now this ones anti afos and wants nhs ortics opions

ariane

if you cant moan on here where can you moan we all need an outlet and mumsnet is mine and sometimes think proffesionals could learn a thing or 2 from here to mind could learn from us parents to if they only listrned

That is so true, maybe we should instruct them to read our opinions on here!
....likelyhood of that ever happening....

Does this physio explain his/her justification for being anti afos? That would be an interesting opinion to hear!

No she feels they don't work even though piedro boots he walked over in like 3 steps back one forwards .

Where I was told that they were trying a stop him going over and b that the private guy we saw wS saying he is trying to stop ds overextending his knees and hips to try and prevent even bigger issues later in life

But to keep peace will see nhs orthtics see what they say mind next month could be new physio and all change

Really hoping genetics can come up with some answers and stop stabbing in dark by differnt proffesionals

How's the gosh orthapeadic referals coming along ?

Still waiting for gp to come back from holiday so he can chase it along for me, and seeing him next wednesday. Anything to help with hips and knees in later life....sounds like good advice to me, wish we had known more, my kness are completely buggered.

Yep same here I had surgery at 19 on my knees yet what I know now was that it actually very rarerly works.

Once seen geneticsc which I hope they can say fast if Eds then might start getting somewhere with other proffesionals or I can say well he has this if you know nothing go learn or just get of my case send us to see people who do know

That is exactly the line I am planning to take from now on, not standing for "I don't know", "I'm not interested in..." etc

Please can I join in here? Dd is 7, she hasn't got EDS but has got Marfan Syndrome so has a lot in common with some of you.

She saw the physio today, who was very curious as to why dd needed a wheelchair (dd was referred to wheelchair services by a previous physio!)
As well as having ridiculously hypermobile joints and low muscle tone so she gets exhausted quickly, dd also has the cardiac problems that come with Marfans. So if she gets tired, it is anyone's guess whether she will dislocate something, collapse in a heap or go blue round her lips first. Although she can walk, it can be a risky activity for her even with DAFO's and Piedro's.

So, even people that are meant to know about hypermobility etc. really don't have a clue sometimes.