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.

deep breath ds has epeilepsy and it will just mean that someone has to be with him in the water at all times

hmm i knwo ds3 will more likely get the hypermoblity Eds but tonight when getting him ready for bed when he was lying down on his back noticed right across his chest his veins are noticeable

He has always had noticeable veins on his forhead on his cheeks and his chins but did make me wonder when saw his chest veins never really paye dmuch attention before , is it something that i should draw attention to when see genetics

there not quite so noticeible when he stands on his chest but are on his face

Dd has veins on face that are notiacable and inside her elbows you can see where they have ruptured and bled Not sure if that's from when had ivs or not, ds1 and ds2 don't have noticable veins like that or me

Just wanted to add that 2 of my dc are dxd with hypermobility syndrome, with a probable hereditory factor. My brother and I also have been dxd, as has both my mum and her brother, and my nan. Yet they still won't refer us to GOSH, or let us see a geneticist. I'm 22 wks pg again, and as 2/3 of my current dc have HMS (which we firmly believe is EDS), I'll not be surprised if dc4 has it too when he arrives in Jan. If he has it too, I will INSIST on us all being seen at GOSH.

TBH I'm just fed up with fighting the NHS, they won't even give DS2 his piedros any more as he's 'over 5yo'. Which is when they discharge them from OT here now. And to top it off, despite being assured that it wouldn't happen, his school have put him in the only upstairs classroom. And are wondering why he is complaining of 'kneeache'. Might have something to do with the fact that stairs frequently sublux his knees??!! tears hair out. There is no way he can move class either as both other classes in his yr are over-full. And as for his writing, and the now NON-EXISTANT help he isn't getting from TA....pfft. And still no laptop. Or writing slope. Or wrist supports. Or balance program that was meant to be implemented. And I'm not fed-up with it at all, honest. .

Loudlass, that's terrible about your ds' Piedro's. Is there any way that you could get him referred to a different hospital that would give him the boots?
Ask school to swop ds with a child from a downstairs classroom. They might not be keen to do it, but if there is no lift and your ds is at risk of falling/injury from climbing the stairs several times a day they will have to do something. Very frustrating situation when they knew to put him downstairs.

Roundthebend, glad they don't stop your ds from swimming. It's good to hear that at least some people are willing to help.
As for the veins, isn't having translucent skin a clue for EDS? I would mention it to Genetics and they can check it out.

Hope you all get a bit of a break from the aches and pains tomorrow. I am arthritic and am not enjoying this weather either!

Hi loudlass yep I remember oh to well the Ot problem there who said no boots ,Frank at orthtics? .ds is wearing afos now but has review end if October thankfully not in Essex any more

Think it's because ds is prtected with a statement to that there able to be pushed into doing things ,though unit is good knowing ds was starting the caretaker had built ramps and put handrails on

Were fortunate that they even gave own small playground so ge is protected from the pushing and shoving in the main one

I am having the most awful week, dd back at school and absolutely exhausted which makes her grumpy so all ive had is floods of tears every day from her aft school and a bit of bad attitude but i cant really blame her as she is in pain a lot of the time, she is also having a lot of trouble with her left shoulder as where she has pectus excavatum and her chest goes in and is uneven on one side it is doing something to her neck and shoulder as she grows so now her shoulder seems to be permanently subluxedd she seems twitchy always 'rearranging' her neck and shoulder if you know what i mean, its starting to like very different to the other side and is obviously uncomfy, she is self concious about it and i find it heartbreaking that she wants pretty tops etc like all girls do but always wears ones that cover her chest and shoulders and will refuse vest tops as she says she looks wonky.

ds is in a state, constantly needs calpol and nurofen for back pain and has also been getting tummy ache a lot, he is tired and will be falling asleep by 10am every day and really struggles on the days he has pre school, they have had to set up a little bed for him in the corner.he wakes in the night in pain and i cant seem to find anything to help.

I have been in agony from pushing double buggy ive got wrist splints but since wearing them, although they help my wrists iam now getting pain up the back of my upper arms and across my back,every day is a struggle and am finding it hard esp as ex is @out of action' due to dislocated knees, i feel like eds is destroying my life at the moment,dd2 is clicky and very mobile in joints and i keep thinking is she going to have a hard time like dd1 and ds and iam miserable.

sorry for the gloominess of this post i think i needed to just get it all out its just been one of those weeks

think the weather is affecting them and us , ds comes home eats and falls asleep then wakes up screaming and sobbing during the night have spoke to school but they say well he does not say he is getting tired trouble i find is he a does not know how to say he is tired or that it hurts and he does push through it in day to suffer later

thats a hard one ariane for dd must admit being aware that you dont look the same as others ,DD struggles with being very tiny comapred to her peer group and she sonly 7 so can imagine how your dd is feeling

yes, she has suddenly started to realise i think, she will be 9 in nov and every day since they started back she has come home begging to not have to wear boots anymore she wants the pretty shoes all her friends have then she gets upset says she hates herself etc etc it is hard for her and with the chest and shoulder looking so uneven now she is getting very self concious and down about it, i was worried maybe somebody had been horrible to her at school but she says not so i think she is just at that age where she is beginning to realise she is different.

Hi guys, thanks for your messages of support. Reading all your messages about your dc over the last few days it is like I could have written it myself, pain, exhaustion, ds this morning could have won the gold medal for sheer grumpiness, he was snapping at his sisters in a way he never does. He woke late, said he slept badly, and feel asleep in the car when going to school (only a 15 min drive).
The meeting went fine yesterday with the new Head, he wanted a run down on eveything that had happened/was happening, what the current medical advice was, he listened, asked sensible questions, then asked what ds needed to facilitate swimming, and said he would sort it. I was so relieved, got myself so worked up as I am so used to having to battle everything, well you all know what it is like.

Ds is 7, we don't have a statement for him, just a health plan and risk assessments for him, not even sure he is on the sen register, having said that the senco has been brilliant in trying to do the right things, although not always allowed to senior management team , hopefully new Head is changing that.

No call from school yet, so hopefully he is ok so far today. I am going to try to persaude him to have a long "play" soak in a warm bath when he gets home to try and ease his joints.

ariane, would you be able to get some help from Homestart or something similar? I wish they'd been around when my dc's were small. I know what it's like to have to manage the best you can, as my dh isn't able to run about after our dc's.

My dd is 7 and she has pectus excavatum too. Our dd's sound quite similar with the not wanting to wear the boots and have the same type of shoes as their friends. It hasn't helped that our hospital has started using a different supplier and so dd didn't get Piedro's this time with her DAFO's. She got Fitzkidz boots (think that's what they're called). They look more like traditional oversplint stability boots. Although they do the job, if I'd known before they ordered them I would have offered to pay for Piedro's.

deepbreath you can order piedros privatley i have been doing mind ds afos were made private to due to waiting lists .Though my dense new nhs physio insists ds sees the nhs orthtics for second opion before we get new pair .

we only got to wait 12 weeks for the nhs appointment and his are now falling apart ,normally i call clinic that did last time and we see the orthtic guy within a week or less if theres problem , if had the money i would go private for everything

Hi sparkle so glad thinsg went well and the new head seesm to be on the ball

Do you have the specilaist physical disablites teacher team on board?

I would seriously consider about applying for a statement even if just for few hrs as his physical problems affect his schooling im right in thinking tha handwriting hard etc .W

Do wonder if its when our dc at home we can make sure they rest and dont over do it , w emake the judgement calls , when at school there expected to do it and as teachers dont know them they leave it to the dc and there kids so they dont always do it

Ds is exhausted really is falls asleep coming home and then has dinner and goes to bed no life for a 5 year old .He cant even do his beloved wheelchair sports after school once a week as is to shattered .And that was so good for his self esteem and to realise he is not only dc needs a wheelchair or is slow to walk as its aimed at all dc with any kind of needs be that wheelchair or dyspraxia atc plus nt siblings

You are so right rtb4 handwriting, lengthy writing etc is a nightmare for ds, he always ended up in tears last year, his teacher was so lovely and supportive, always encouraging him and not doing too much with him. This year the teachers' know it is an issue, and he had to do some the first morning, and didn't cry which was a major achievement for him, but it was when doing this that he tensed up his body so much that he sent his neck muscles into spasms.

I am watching him across the dinner table as I type and he is as pale as anything. He apologised to everyone on the way home for being so grumpy and unreasonable this morning, he said he just felt so tired. I had to fight back the tears.

I haven't heard of a physical disabilities teacher, is that someone within the la, could he access that without a statement?

It is so hard to watch them so distressed by being different from their peers, Does a huge amount of psychological damage, and I will have to sit on my hands in order to not punch the Rheumatologist on the nose if he dares to say "We don't want to ....provide whatever support ....as we don't want to make him feel disabled" Seeing him next week.

Sparkle you hit him I'll hold him then we can swap ergot that from ds3 paed about not letting ds see himself as disabled I just pointed out can't walk far can't talk etc FFs ge is disabled much rather he knew it and delt with it now

Have friend in wheelchair who said ones that have the hardest time adjusting is those that don't see themselves as disabled then one say it hits them they are disabled differnt to their peers and crashes in where those brought up with healthy attitude to the I'm disabled and do things differnt so what have better attitudes to life

I feel very reassured that your friend feels that, I have always felt that it is better that they come to terms with what they can and can't do now, than really struggle with being different from their peers when they are older.

I think I will need to make a list of issues with dates where appropriate, basically collate as much info as possible so i can counter his anti-disabled arguement with real facts, and achieve main aim of getting this referral to GOSH supported by him too, so ds can finally get the management plan he needs.

Know what I have to do, but still feel daunted by it, an exhausted by the battle. Do you feel that your personal relationships suffer as a result of the stress, I know I am always shortchanging dh, and others in rl

Hi everyone,I can't believe it but I've just read through the posts, and it's like I'm reading my own life back, but with someone else writing for me. It's a struggle, and some days you just want to sit in the corner and cry. I am home educating my son now as the total incompetance from the school despite an SEN and back up from GOSH is breathtaking. The change in him since the pressure from the judgemental attitudes and lack of support and understanding have been removed is startling. I have my son back. We are learning in our own way, and at a pace he can deal with. Its legal but the LEA don't like it, well its tough, until they can find him a better school. He has been awake with subluxed knees and ankles, lower back pain and night terrors as he wakes in pain and has no idea whats going on. His immune system is shot and he has a cough/cold that'll go on until next spring, if previous years are anything to go on. With the tendency towards Vascular he is very thin, but getting thinner, pale and drawn and all the viens are more visable than ever, and the summer is only just over. The fight with the LA is only just begining with his Caseworker being less than helpful - never returning calls, or following up after requests are made for information. Sorry for the rant but I'm getting close to the point of no return this evening. All I want to do is make life better for him. Is it too early for a massive glass of wine do you think?!

mycars looking at ds veins im wondering if he might possiably have the vascular type as noticed last nigh when he wa slying on his back you can see whole network across his chest , has always had very visable ones on his cheecks jaw forhead etc and is very thin and oale to hmm

nope forget glass have bottle , im giving my liver night of have friend staying and well we been enjoying the wine

Hes gone to get us chinese tonight

Sparkle

Maybe its easier for ,me as im a single parent so dont ahave to balance needs of a partner or husband so i can be selfish in way you cant

Though sometimes its juggling act to balance the other dc i manged to miss ds2 have crohns i ha dmention to dr about him needing loo a lot but did not chase it up till he scared himself and me bu having large rectal bleed

but i dont ahve much of a social life as very understand it and friend shave fallen by the wayside

I have been investigated myself so many times for the vascular type of eds I am confident that I have not handed that type on to my ds, and Prof Grahame was definitive about eds not "jumping" type. However veins are quite visible on my ds, I have always put it down to the fact there there is nothing on him, he is tall, very slim, with elongated muscles. He does however have relatively strong muscles (it is all relative!) I think, the physio has been pleased with how is strength has improved around his neck and core muscles, not enough to stop the subluxations and dislocations but I think the aim is to try to limit the "minor" joint damage that leads to longterm joint erosion.
i think dd1 suffers most from ds's condition, she is very close to him, vey frightened by his vulnerability, and still very dependent on me, she is only just 5. Psychologically I think she is the most vulnerable.

yes think with ds3 im more futnate in that he doe snot undertsand it all though downside is he cant explain what he is feeling where he just yells a lot

ah see ds muscle tone is pants think only his left arm is normal but is that the cp , the eds or something more am hoping Monday with genectics might eb start of finfind out though am going to push for referal to Dr grahams clinic

Hope everyone is OK and that you've had a peaceful weekend.

We went to a small fete with dd's friend, and dd was adamant that she wanted to walk round it and not be in her wheelchair. She needed a lot of rest stops, and was overtired afterwards.

rtb4, hope your genetics appointment goes OK tomorrow. Some friends do seem to clear off if they see there is a problem - I have had this with the inlaws too, my dc's rarely see their extended family as it seems to be too much trouble for them to come here... maybe they are worried in case we ask them for help?! They can all manage to see SIL and their dc's who live less than 5 mins away.

Hi deepbreath we had busy weekend here but ds gas been using his powerchair as was just sio tired after school week and could not do more than 3 steps without going over

I'm adding myself to the walking wounded list last week I twisted my Hip and still sore from top of my hip all down right hand side thigh to walking makes it sore or sitting against it orgetting up and down or stretching or curling it up changing from one postion to
the other hurts

.am knecking paracetoml and nurofen like there sweeties and but just takes the edge of it and do tend to have high pain threshhold as after having ds3 by csection after first painkiller injection only ever needed paracetmol but this seriously hurts :(

I am sending all the npositive vibes I can find to you rtb4, I hope it goes well today.

I was just about to send this message when I got a phonecall from school that ds is in pain with his neck. He is resting and in his collar, so we will see how he is at lunchtime. I have just upset his keyworker over the phone, by assuming that she knew she is not the one designated to take him swimming.....oops internal politics, she is so good, to be honest I am not sure why she can't take him as she knows it all best anyway, I tried to encourage her to ask, I feel it is not in my control to decide who goes, as long as someone appropriate goes. I feel very bad though, she is absolutely fantastic and having a difficult enough time professionally and personally, and ds loves her and trusts her.

I was going to start my diet todaym, and finally try and lose some weight to feel better about myself, choccie biscuits are looking good now.......

Oh no hope it eases by lunchtime

Yes before holidays had been doing well going to gym etc even over summer stuck to eating better and taking dc swimming thinking will carry on gym once back on school yet last week or so even walking has been hard anddived into the chocolate

I'm nervours about Genetics can't find any pictures of xh as when we split he took computers destroyed others and despite me texting him as he won't answer phone he so far has given no indication that hewill come to the appoinment

this despite after not seeing dc for 9 months hegot solictor to write asking for contact I agreed and then he pulls this trick so a can't arrange any contact b can't keep him informed and c looks like he has changed his mind thank feck I never told dc

I try not to judeg other people's dh/dp/xh etc but in this case......what a complete and utter....... If he doesn't turn up and you explain to genetics, I am sure they will listen to your description of xh and use that info to help them with their dx. I'm quite sure they will dx xh as a g*t too!

Hmm just got beadsticks out of cupboard for dd2, and four choccie biscuits fell out (honestly they really did) I took it as a sign....