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.

Arianne google snapping hip it can cause back pain to it's related to being eds suffer but might fit

they are bit sore as is my neck and back but i think thats due to a day spent carrying baby round and then ds on train homedont usually lift him but had to as he was wobbly and bit unhappy.

rtb4 i will have a read about snapping hip and see if any of it sounds like ds.hope you are ok and your hips getting better

Slowly getting there just would like to br able to walk without crutches but knew going to take quite some time

Ok ds2 know he's hypermobile but does not suffer pain or had any dislocations

Wants to join the rugby club at school pe teacher has asked him to as in lessons he's prooved to be a good winger as has a turn of speed and considering he looks luke puff of wind would blow him over has been good at tackling to

But I'm scared thinking could start dislocating joints luke mad but he really wants to do it loves the game

maybe have a word with him and also the teacher just to let them know he has to be a bit more careful than other kids. my dd seems to know her own limits you may find your ds is the same i think sometimes they do sense what things they should/shouldnt do.
its hard to find the balance between keeping them safe and trying to let them lead as normal a life as poss.

hi

I have 2 girls with significant hypermobility. is it worth getting referred to see if this is EDS, or just benign?

dd1 is extremely supple, had a couple of dislocations in her life, and has a leaking mitral valve.

dd4 extremely hypermobile, pretty much all joints affected.

yes def worth it misdee, getting accurate dx is very important especially as you have mentioned leaking mitral valve. a referral to a genetics specialist would be a really good idea as they can test for other related/similar conditions such as marfans or give you a def dx of eds.

marfans has come up a lot over the years with regard to dd2 (slight hypermobility, nothing like dd1, dd4 though). she is extremely tall for herAGE.

DH tall, flexiable and had a heart condition (now post-transplant). long fingers and toes.

Hmm misdee with family history like that it would be worth asking ic nothing else set mind at rest that not marfans

Well after discussion with ds2 I'm now £40 poorer as brought rugby boots and needed new shinpads for footy to but he's thrilled that I said yes as his sport teacher wants him try out for the under 15 club so my hearts going to be int mouth every time he plays

But at 13 guess need to let him choose and touch wood he has never had any dislocations with it ,just the bowel side and at 5,10 is very slender lol not very rugby like build really but after convesarikn with pe teacher who is aware of eds and pointed out plan I's as ds is fast is to play him as winger or forward so should advoid worse of scrims though apparently ds tackles like he's twice size he Is but have had to accept that there's times when ds could be injured and not just down to the eds either .So will review after a while

Hmm don't think ds2 knows his limits as not had problem but he does understand the risks and said well going to have to run faster then goes of to bite nails at thought of phonecalls

Hi Misdee, my dh and dd both have Marfans. From meeting lots of other people that have it, it isn't always as obvious as some doctors think it would be - it all depends on how badly affected you are. I know of a couple of people that were diagnosed in their 50's or later after a lifetime of doing very physical jobs. One was in the armed services, and passed all the medicals during his career!

Even if it isn't Marfans, if the hypermobility is causing problems it is well worth getting some help. My ds is now also showing signs of hypermobility in several joints, despite a negative genetic test for Marfans when he was a baby.

RTB4, dh said he played rugby when he was a teenager. He managed to play without dislocating anything - I was amazed because the wind can change direction and dd will pop something out of joint!

Hope everyone is OK

Hi guys sorry have not been around. Ds has been in hospital, with spinal dislocation again. He is home now and doing really well, went throught to whole to mri or not to debate about a million times. As we don't have an orthopaedic surgeon at the moment they didn't know what images to ask for! Apparently they have requested Mr Marks of Birmingham Children's hospital and Orthopaedic Hopsital to take ds on, has anyone any experience?

Rugby is on ds's mustn't ever even contemplate doing list according to the doctors, but that is only because of his neck problems. It is hard to balance protecting them with leading a normal life, but I think from your description I would have given him the go ahead too. Some of the best sportsmen and women are hypermobile after all, and if he has no pain and no history of dislocations, if it wasn't for your other dc you probably wouldn't have worried about a dx him at all anyway maybe?

Your right if not for ds3 would not have even worried I would just lived with mine .Tell ds ty deepbreath was reassuring to hear that ge. Played and survived

sparkle sorry to hear about ds but glad he's home and yes ds3 will never do any form of contact sports even from his chair he sneezes something goes .Though since got him a new lightweight chair hrs pretty nifty at self propelling as is set up better so not so much strain on his shoulders also has started getting into wheelchair racing not serious just messing around having fun

hip is slowly healing been able cut paineds down a bit and can finally sig down though lol need crane to get back up

I am glad you have been able to cut the pain meds down a bit rtb4.

Ariane have you got any news today?

no didnt hear from them so i phoned in afternoon, finally got through to somebody and they said they will be having their meeting to mo and will phone me afterwards with results.

dont know if that is good or bad iam a bit on edge i was expecting to be told today and now i have to wait till tomorrow. i am terrified they have found something awful.maybe iam just being paranoid and over anxious but i cant help it i dont think i will sleep much tonight.

sparkle-sorry to hear about your ds i hope he starts to feel a bit more comfortable i can really really sympathise and know how worrying it is with a spine prob.

Thanks Ariane - he was still in pain today, but much better than he had been. I am hoping that with his neck brace and restricted activitied I might get him back to school tomorrow. Have you heard anything today? I have my fingers crossed for you.

finally heard from gosh last night at 7pm, they said the mri was normal and that they are sure all ds pain is due to his back being extremely hypermobile and having virtually no core muscle strength so after seeing consultant and physio at next appt they will be able to give him a more intensive physio programme and in the meantime we just need to manage his pain.

iam so pleased it was normal, i was starting to worry it might be something awful. i mean,horrible him being in so much pain but at least i know its the eds and that theres a possibility of managing it.

Iam seeing the ot today shes coming out to assess whether they can adapt my bathroom as its so tiny that i cant bath the kids there as they slip/i hurt my arms and there isnt even enough room to turn around in there so iam hoping they will knock it through into one room for me as at the moment i have to go to my mums every day to bath the kids.

Thurs i have doctors for me as have finally realised i need some help as am really depressed, have burst into tears every day for last week and am exhausted and completely fed up despite getting help from my mum and ex partner i dont seem to be managing well at all.i think ive just got run down and to the point of collapse every day is a big big struggle and i ache everywhere and feel generally rubbish.

Everything is so hectic, dh away again tonight, and dd2 is screaming at me........ Will post again when I have got them all into bed, working on about 7.00pm for that!

Hi

I took my DS to GOSH clinic yesterday. Our OT had said he was hypermobile but a referral to physio would not be made because they don't deal with that here - i.e. they adopt the 'there's nothing you can do about hypermobility' approach.

I asked the physio about the difference between hypermobility and HMS and she said 'good question'. Basically, she took the view that there wasn't one and that HMS was the same as EDS Type III which she said DS clearly had. She said it was all about labels and they didn't like to talk syndromes as this wasn't helpful. Their focus was on managing hypermobility and improving core strength.

She wants DS to see a podiatrist and we are seeing an OT there too.

Trouble is we are paying! Is it possible to get an NHS referral do you think?

Absolutely, you need to go to your gp and get a referral to see a paed rheumatologist, asap. If you tell him you have a dx from OT and GOSH clinic it will go through straight away, or it should! A rheumatologist will give a dx of either Benign Joint Hypermmobility or EDS Hypermobile type (formally known as EDS type III). That will then mean he/she can refer you to to physio, which I think everyone on here will tell you is extremely helpful in stabilising joints, if you can find the time in the day to actually do it twice a day You should absolutely be able to access OT podiatrist etc via the NHS. Where abouts are you, and do you have a good gp?

OK all in bed now, baby threw up on me as I was putting her into bed, guess that is why she was screaming, probably picked something up whilst we were at the hospital on Monday. Hospitals...a joy that keeps giving

Ds has just got up as his neck is hurting again. What a week.

Ariane - I am so glad the mri didn't show anything else. Let's hope that some good physio, ot support and painj management can really help with his back. I have my fingers crossed. I am so sorry you are feeling so down. I can completely understand how you feel, you have described me when you described yourself. You are managing though you are doing a fanastic job supporting your dc and dealing with your own physical disabilities. You are an inpsiration to me! I am really pleased to hear that you are going to the gp for more support. I hope it went well, and the ot. Let me know how you are doing.

Thanks. I have a good GP but the problem is that hospital level services have been very unreliable - e.g. no physio for hypermobility. We have a general hospital here and I'm not even sure if they have a child's podiatry dept.

Could I still to get to GOSH through the NHS?

Yes your gp can make a direct referral, there is info about tat on GOSH rheumatology website under infor for medical professionals, if you can't find it let me know and I will post a link. It says that gp referrals will be accepted under ceratin circumstances, I would ahve thought your hospital not providing such services would be a sound argument. They must have a rheumatogoy department though. You could try asking your gp to write to the physio providing basic info about the importance of physio in hypermobility. Or alternatively I could hold her down whilst you punch her in the nose.....might not be as productive but I think we would both feel better about it, and it might help her general ignorance... sorry don't usually resort to violence, but it has been a bad week. Laugh or cry stuff.

Rubbish typing sorry.

hi all,had a bit of an up and down day, very busy. went to gp she is going to refer me for some counselling that incorporates cognitive behaviour therapy-not sure if thatll help but willing to give it a try??!!

I think in all honestly im just absolutely knackered in every way possible mentally and physically i dont know how i get up some days.

ds didnt have a great day today, was really tired and his back was aching, we went to a friends babys bday party and for a while he just lay in the little ball pit they had there on his back looking all sorry for himself and then just at on a chair for the rest of time watching everybody, i felt really sorry for him.

dd1 is having terrible trouble with her schoolbag (backpack) being too heavy and really making her back,neck and shoulders sore so am off to mo to try and get a diff type, she wants to be like her friends and carry a bag but its just hurting her and then she gets tired and very grumpy and fed up.

im off to bed now have to be up at 6am-i cant wait for the weekend i hate being up so early in the dark and cold!

hi soprry been catching up.

Glad that the mri was ok and sorry having rough time Ariane i to have been feeling pretty low with this hip issues and yet normally im a postive person

and huge sypmathy to having to mange in constant pain has really opened my eys to what our dc go through

Debs sadly even if get to physio they know very little about it , ours know snothing and was gentics that gave dx in oh about 2 sconds flat informed physio she slike hmm dont know anything about that arghhhhhh

im fortunate im now under ortho someone who has least some intrest in Eds and bit of knowledge am working to get ds under them

hmm if no luck with podiatry can reccomedn the Dorset orthopeadic clinic if nothing else for a opinons on what they feel ds needs they was very good even calle dthe nhs team ( disclaime rhe did use to work with our then local one when worked in nhs)
and tried to get us up the list but could not in end we went with them privatley and do admit they have been fantsic .Though our shitty physio is insisting this time we need swee the nhs one as she wants their opion and im like great ds afos ar ebroke was going get new pair made private but ther enow so broke he cnat wear them and had to wait 12 weeks to be seen

only agreeing as we had issues with ss at one point and commenst about me seeking private help so covering my arse though the ortics i spoke to knows of clinic and agrees good reputation so am hoping she agress to me staying with them