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.

Monday I was called to school for ds to give pain killers, physio and a bit of comfort, he had neck pain all day and the tingling.numbness all day too, but Tuesday and today he woke up and bounced out of bed saying he has no pain.....he has been a different child. He had pain in his neck by yesterday afternoon and was wearing his collar, but by all accounts he had a pain free morning, and it was wonderful to see. Made me realsie how much the niggly pain as well as the severe pain brings him down, and it was so noticable in terms of his mood, he was smiley and chatty and more like his old self again.Feel happy and sad about it at the same time, if that makes any sense at all.

Fingers crossed for the dla....I am not sure how it will go, I fear they will be difficult and we will get a response like the one your ds's physio comes out with!

hello, hope you are all ok. we have been really busy and not having great time.dd2 dislocated thumb today but im trying to keep going.finding life hard at moment

Oh Ariane, I am so sorry it all feels a bit much at the moment, talk to me about it, may be sharing your stresses with us will help I don't know, but don't sit and suffer in silence.

its just everything, too many appts and iam exhausted i spend so much time going to and from school/hosp/doctors/physio/speech therapy etc etc it has just got too much and dd dislocating thumb last week was the final straw i just broke down and ended up crying in school playground.feel like an idiot.

the weather doesnt help i dont drive so get cold and wet most days and me and kids are all run down, ds and dd2 have colds and dd1 has chest infection so not even getting sleep.

sorry to moan, i think its all just got on top of me, i have to be so organised day to day with school and appts but ive let everything slip, house is a tip so keep forgetting things when i go out i dont know where anything is and ive got in a complete muddle.and im lonely i miss ex so much i see him few times a week he helps out but i need somebody to talk to sometimes and im just so lonely without him

things are a bit better today, i have decided to just stay in for a few days and let everybody get better as ds on antibiotics as well now for a chest infection.i think id been doing too much so everybody being unwell is forcing me to rest! I am glad to not have to go out in the cold this morning anyway, i dread the school/playgroup run most days as i have to be up at 6am and out of the house by 730 which is hard with 3 kids and 2 lots of physio and whatever other problems crop up (something seems to go wrong every day)

dd2 thumb seems fine now, it was totally my fault- she had a new snowsuit and the sleeves were quite narrow(or maybe she has chunky hands!?) and i was in a hurry to get to school so when i put her arm in the sleeve i didnt realise that her thumb hadnt gone through properly and was completely bent back on itself which made it dislocate, my sister had alook at it and it popped back in (ds thumbs pop in and out too- easily but painfully judging by screaming)but it had looked quite horrendous at such an odd angle and im ashamed to admit that ever since a child dislocations have been a bit of a phobia for me mostly due to the way the joints look so odd when they are out of place and i get panicky, hyperventilate etc.i got to school but it had been raining,i was soaked and freezing and just burst into tears i felt such a fool iam sure everybody thinks iam mad now iam so embarrased.

hopefully by having a couple of days at home the children will get better, i will get a bit of a rest and things will seem a bit better,i feel like i try so hard and yet whatever i do things always go wrong for me.

I know that feeling, but you are run down, your body is telling you so, and you will feel a bit better when you are all over the various viruses etc. I don't think anyone will be judging you for crying on the playground, no one will think you are mad, you have a huge amount on your plate and people will realise that, I sometimes have other parents coming to me and saying I don't know how you do it.....and I have only one of my dc with eds, you have all of them. You are down and stressed, over worked and lonely, but you are a super mum who loves her dc best in all the world, and although times are really hard, you will survive this, I really believe that. That is what I try to say to myself on my many many down days, I know how you feel, I am sending you a virtual hug and cup of tea.

thankyou so much,the support and kindness means so much to me

Gosh I have had a rubbish day, on top of everything else I am know being investigated for Breast cancer. Early days yet, so trying not to worry too much.

How are you feeling Ariane? I bet everyone was completely normal with you on the playground, You know, I meant to say earlier that when they dislocate fingers it can happen so easily, my ds first did it by putting his hands down on the floor to help himself up from sitting cross legged in front of the tv.

I always get all woozy and funny when the dc are hurt, I can't bear them being in pain, great big woose (sp?) me! - worried about you Ariane, talk to me some more.

Dearest wonderful mums, I am so sorry I have only just discovered this thread today?.

SparkleRainbow, you are a truly inspirational lady and I really hope that your investigations go well.

I was diagnosed with EDS type III about ten years ago. Unsurprisingly, it was by pure fluke - seeing a locum GP (mine was off skiing), who referred me to a performing arts clinic, where I saw Prof Grahame. I'm short of time this evening, as I'm trying to catch up with work because of time missed for hospital appointments (hmm, familiar?!) but have to quickly write and say how genuinely completely in awe of all of you and what you do on a daily basis. I have a 2yo daughter, who is constantly being watched to check for signs. The guilt I feel is immense but we have to keep carrying on. I hope and pray that she will not turn out like me - my pregnancy nearly killed me and I had dislocated hips for 33 weeks of it. She is worth everyone of them though. Still, I can't run for a bus. Run for a chocolate biscuit? Now that's a different matter entirely?

I mainly wanted to post this message tonight, as I wanted to say there IS a medication available in the UK for low blood pressure/postural hypotension - it's called Midodrine - or Guttram is its German name. The Germans are apparently shit hot when it comes to treating low bp, whereas here is near enough ignored, with faints often being regarded as something to 'grow out of'...

To ANY OF YOU who are having faints yourself or little ones with low bp symptoms, PLEASE, PLEASE, PLEASE try and see Prof Christopher Mathias at the Autonomic Unit at UCLH. He literally saved my life. Not meaning to cause alarm in any way - as I have a very rare combination of conditions - but he tested me, I fainted and they realised that my heart was stopping for 20 seconds. I'd spent 24 years fainting and my mother screaming at doctors for help to no avail. They tested me for everything, labelled me as epileptic despite negative tests (a very common diagnosis with EDS type faints, apparently) but my mum kept on. I then picked up the baton and researched my symptoms myself. I begged my NEW GP to write a letter to Prof Grahame (who referred me onto Prof Mathias) by putting together a 70-page document of research evidence I got from the British Library! One of the most infuriating things about EDS is the complete lack of knowledge that most Drs show. I always felt bad badgering my old GP for help, I was exhausted and couldn't fight on but then what would the alternative have been?

As I said, Midodrine is available but I think only a few clinics can prescribe it. I'm not sure where you are all based but Prof Mathias's Autonomic Unit at UCL can do scripts, as does Dr Antonios at St George's, Tooting. There's also the "Falls and Syncope Service" based at the RVI in Newcastle, run by Professor Rose Ann Kelly. I take a tiny amount of Midodrine, three times a day and have done so since 2006. I cannot begin to tell you how much it has improved my life? I can stand up without worrying about keeling over and all those years of fainting in assemblies, warm classrooms and PE lessons are behind me! For those with serial fainters at home, please check out the STARS organisation - www.stars.org.uk

Sorry if this post is completely rambling and a mess but I've tried to read thru all your posts and been in tears to read what you have been through and how you continue to be such wonderful mothers to your wonderful children. I'm going to stop because I'm gushing like a loon now. Please take care all. Pass the choccie biscuits? x

Thankyou squintytiger it is nice to feel so supported and info re fainting very very helpful

sparkle-i hope you are ok my heart sank when i read about you being investigated for breast cancer-as if you dont have enough to deal with already you poor thing i really hope it all turns out to be ok i have everything crossed for you.

Iam ok i just think ive got to the point where its all a bit much and im just exhausted iam going to see my gp tomorrow so maybe that will help, iam starting to think maybe i need some antidepressants to lift me out of this a bit.although saying that i suppose tablets dont actually change anything but maybe itll make me more able to deal with things as at the moment iam bursting into tears at the slightest thing and feeling really rubbish and everything is just too much for me to face.

I havnt been to school this week yet as all 3 are still really poorly with chest infections so im going to wait till antibiotics have kicked in and they are much better as dont want to take them out in the cold, last night we had a bit of a drama here i found ds choking on what (quite horrendous) stuff he had coughed up he was nearly purple it was terrifying i only heard as i was upstairs having a bath i dread to think what id have done if id been downstairs, i got my ex to come round as i thought id end up having to take ds to hosp but he was ok,ex had to sleep in his room with him as i was paranoid if he did it again i wouldnt hear as im up feeding the baby in the night and didnt want him to be on his own.

i feel so unmotivated at moment i have so much to do yet just want to laze about as am knackered i hope i can pull myself out of this usually i just get on with everything but i feel like something clicked in my head and now ive switched to being a nervous wreck.

Hope you are all ok today.

i have just got back from the doctors they have put me on antidepressants and im really hoping they help as i am really not managing at all.
it didnt help that when i left the house i managed to shut my little finger in door,sliced it open and then burst into tears and couldnt stop crying the whole way to the doctors

got home to 3 appointment letters waiting for me so things are getting even busier (ds hearing test,dd and ds physio appts) iam just too busy and too tired

You have made a positive step for yourself today by going to the gp, I am sure. You have got so much to cope with by yourself, you are doing amazingly well.

How are the viruses doing, are you and the dc feeling less groggy?

I am feeling lousey with the medication the drs have put me on pending the breast cancer scans etc, don't think the miserable weather helps. Dc are doing book day tomorrow and dressing up for children in need.....ds as Harry Potter, dd1 as Heidi, very cute, but very stressful!

How are you guys doing? It has been very quiet on our thread of late. I am sending you all big

Sadly the bubble of no pain for ds burst yesterday at school, and we are back to "normal" , but it was a glorious 6 days of having a bouncey happy child.

I have had a mammogram and ultrasound today, and will have to go back for a biopsy sometime in the next few weeks....I could do without this too. But on the positive side I can honestly tell you that the common cold does not respond at all to massive doses of antibiotics, no it is true the medical profession have not been lying to us about that one!

Found out we have a bear emoticon so, as I said on the breast cancer thread......just because I can

There are wonderful people on mn, I feel so lucky to have found it.

we are ok feeling a bit better thankyou managed to get dd into school on thu and fri but ds still too unwell for playgroup although his antibiotics seem to be working and temp has now gone.

so sorry to hear about you ds being in pain again sparkle but like you said those 6 days must have been wonderful for both you and him,sometimes my dd has days like that but once i thought wow this is great,took her to the park let her play and run about and that night she woke up, couldnt move and was in bed for the next 2 days in agony i felt awful. but now when she has a good day i have to try to not let her overdo it, its hard as other people take it for granted sometimes their dcs running,playing and having fun where for us it doesnt happen often that they can do that and be pain/accident free.

i hope your ultrasound and mammogram went ok and that you dont have to wait long for your results, it must be such a worrying time for you and i really really hope it all turns out ok you are a lovely friend and so understanding of what trouble i go through.

Thank you Ariane I hope you have had a good weekend and that all those antibiotics have got you all on the mend.

Ds has had a good weekend, he went to a friends birthday party yesterday, and he had a fantastic time, and I have to confess that I have let him play loads on the computer today. He is complaining of pain now, dh is with him.

Got a letter about the dla yesterday. They said they can not make a decision yet as they have requested a letter from his consultant. Which one I wonder, and what on earth will they say, they seem to know so little anyway? It has made we worried about it, I never expected them to just accept it, but I guess I kind of hoped that I wouldn't have to fight for it, and I fear I will. I don't think any of the doctors actually have an idea about how it affects him on a day to day basis. My Gp would admit that and refer them back to me, but consultants...well as we know what they are like! I hope they contact his physio, because she is fab. Dh is being supportive saying we have managed without before now,we will manage without it now, but...... I am just worrying about it, perhaps in order to have something else to worry about?

Wonder if the bear still works...

and it does.....

hi ariane sorry you been having rough time of it hopefully the antidepressants will help

So sorry sparkle to hear your news hope the biopsy is ok .Any luck they can do the 2 week thing there rolling out

Heres hoping on the Dla they did same with ds including contacing his then nursery We now have it till hes 10 so 5 yera sthis time and am waiting on motorablity car we have gone for A WAV

Well bad and good news here seems i manged to find a side effect of Eds now investigated for Marfans though im defintley not tall and thin as i ended up in hospital after having a heart attack and have an abnormal heart rate , it beats 100 -120 beats per minute last week was 150 -180 but it used to be pretty normal at 60-70 so now undwer cardio who wants to run tests on dc especially ds 3

Still not heard from professor Graham yet so will chase it

Good news ss have accepted that ds is disabled and that his needs are pretty high and looks like going to get some funding so he can attend clubs with a 1-1

Oh Lord rtb4 are you ok, what on earth happened? Did you suddenly start having the standard symptoms of a heart attack, how utterly scary. What else are they doing for you.

They have investigated my heart over and over again, trying to find the causes for my fast pulse rate (100-120 has always been normal for me), and for my chest pain, so I am absolutely positive that hypermobile eds has a cardiac element, it doesn't have to be marfans.

How are you doing?

Ariane - I know it is too soon for the anti deps to be working yet, but I hope you are feeling a little better, new week?

I am thinking of you both.

Hello all, I am so sorry that I haven't been around much lately - I certainly haven't forgotten about you all.

Sparkle, I hope that you get the biopsy results soon and that everything is OK.

rtb4, hope you're OK? Not everyone with Marfans is tall and thin, and it can cause problems with getting a diagnosis. Dh was slim until he went into his 20's and let's just say that he isn't slim now! Most of the people that I know are fairly average weight, and I know a couple of people that are below average height.

Ariane, hope things improve for you all soon.

squintytiger, I hope that your little girl is OK. We have got a ds that hasn't got Marfans and a dd that has got it. The docs are learning more all the time, even since dd was born 7 years ago.

Apologies if I've missed anyone, just wanted to pop in and say hi before I put the dc's to bed. Take care, all of you.

I can not believe it Just had to go to see my GP as I have had an allergic reaction to the meds for the breast problem.....(an aside but now I am allergic to penicillin too!) and he told me that he chased the birmingham ortho consultant directly, spoke to him on the phone a few weeks ago and the Consultant said he would accept ds no problem and he might be able to help but HE HAD NOT RECEIVED THE REFERRAL from Rheumatologists yet. They promised to do in September, promised they had chased it when he was admitted in October the first time, and then when he was admitted again....and they haven't done it once. I am so angry I could scream!

I don't know what to do, my gp is going to chase it again, and I know he will but I feel that might not be enough. Any adcive, should I write a letter of complaint to the rheumatologists copied to PALs? Or am I over reacting.....having quite a stressful time at the moment, so could be

Hi deepbreath lovely to hear from you, how are you all doing?

apologies for rant earlier, I am just so very angry with them, the reason the gp and I postponed the gosh referral was because they were so coinvincing.

How are you feeling Ariane?

rtb4 I have been woprrying about you, let us know what happened and how you are doing.

Ds freaked out in the hospital today about lifts, think it was actually about having to go to have his neck brace assessed, but it came out in the form of a phobic response to lifts. Bless

Have just had a phonecall from ds's physio. I left a message with her earlier about the non existant referral, she has emailed the consultants already and asked them to ensure it has actually gone this time.....we will see.

Do any of your DC have a buggy/wheelchair with postural support? DS2 has one and absolutely hates it. He is 2.5 and not walking because his legs bend in all directions. Consultant neuro says it's EDS but he hasn't had a blood test for it or anything but he is very hypermobile and his skin is quite pale and veiny. DH, I and DS1 are hypermobile, bruise easily etc but nothing compared to DS2. Physio says keep using the buggy because it's got great support but I feel so bad for him and I'm hoping it's something he will get used to in time.

Sorry no I just used a standard maclaren stroller. I did put lots of padding either side of him when he was very little to support him, rolled up towels etc. Someone else might be able to offer you more practical advice. Incidentally EDS hypermobile type is one of the ones which has no genetic test at present, so depending which type they think you and your ds may have they may not offer a blood test at all, but dx from clinical examination only. Good luck, with the dx!

Hi Sparkle, you probably don't live far from me then - we're in Coventry. Sorry to hear about your reaction to the penicillin, not the best time to find that out

Complain to PALS, deffo. I know what it's like to have a referral go astray and it wastes so much time. They were concerned about dd's sight and they still managed to lose her in the follow-up system. PALS will do most of the legwork and will mean that your phone bill (and blood pressure) won't be through the roof.

Dd's visibly tired and isn't coping well with the cold weather. Her behaviour is interesting, too. In the last week at school, she's had her chair pulled out from behind her by another child and has also been quite viciously clobbered (her older brother saw it). The kids in question are 7, so God knows what they'll be like when they're older!