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.

So many hoops to jump through rtb4. I have been wondering if registering ds as diabled would help with hospital costs and dh getting time from work to help out with the caring. At the moment I just can't work, even when I get ds to school I have to be on call for phone calls from him. I know I too am feeling down, this has been a bad week pain wise for him. I posted a thread about registering ds as diabled and got some great advice from mns, but just so many hoops and so little knowledge about eds that I am not sure it is worth starting.

Ariane- great news that the gp was supportie and had some ideas to help you.

no hospital costs only claimable back if on Is but the dla will help and often its the dla thats the key to extra things

I have requested a dla pack just now, so I will be able to see what I am letting myself in for. They did say that if he is granted it I would be elligible for a carers allowance, as I could not work at the moment due to his needs, that would help a bit too! Thank you so much for helping me through this.

you need to get middle rate care to claim carers allowance and remember ti fill in from the worse day point of view .I sat there and kept diary of what i did and suprise dme just how much time was spent on ds

That is very useful advice thank you, think I will start keeping a diary from this week, it will help me make sure I do not miss anything out!

sparkle-both my dd1 and ds get dla it really really helps with things like costs to and from hospital, the big double buggy i had to buy,and the private physio dd had when younger as hosp wernt helping and i was getting desp. it is quite a long form to fill out and rtb4 is right do fill it in from the 'worst day' point of view-the only thing i will say is be prepared when you read it back to be a bit upset, it suddenly hit me when i read dd and ds forms what a rubbish time they have/how many diff consultants etc they see and how they struggle every day and i did get a bit tearful as i am so used to it day to day i dont tend to think of it like that but all written down it seemed a hundred times worse, i had had to include extra bits of paper as had so much to write and a couple of supporting letters from their consultants it just upset me,BUT it is worth it as once they are registered theres support out there that you can then access (where i live there are things like transport for school,which i cant get yet as there is waiting list,taxicard scheme,children with disabilities team support etc).

also, make sure you photocopy the form so you have a copy for yourself.good luck.

Thank you, I do feel very apprehensive about doing it, what it actually means for my ds. I know it doesn';t actually change anything, but it is just that it "confirms" life will never be normal for him, nd I am so still grieving over that.

Sparkle it's ok to be sad I have days like that I think ds is doing well then see him with nt peers and want to cry infact I do

But am having to teach ds that yes he is disabled but it's not going to stop him he just has to do sonethings differnet to others .stairs he tends to crawl if more than one ,one step he holds on to door frame to help himself in etc

but the dla enabled him to access things get the things he needs to be able do as much as he can

it can be very hard to accept the 'disabled' label i was told i could claim for dd when she was 3 and put it off till she was 5 as i just wanted to believe it wasnt forever and might improve.

the hardest thing with the dla was just the form listing all the probs (eds+lots of dislocations,pectus excavatum,fainting,migraines,severe allergies,etc etc) it just looks like such a lot and in black and white seems too much to deal with.

it was hard for me to get to the point where i could say yes my children are disabled but it isnt really something that i have to say often-i prefer to tell them they are just a bit different and that there are things they cannot do.

only times i had to say it was when i got queried by some idiot over disabled parking space who said ds 'looked' normal, they were lucky the blue badge didnt end up somewhere really uncomfortable and once on the bus when somebody said i should fold the buggy as ds was too old for one anyway.the rest of the time i dont refer to them as disabled just say they have eds.

its worth it though, i dont work either and get no maintenence off ex partner so it makes a huge diff, i couldnt manage without it.

Think I posted about adult friend who said the ones that have the toughest time are ones who brought up thinking there not differnt/disabled then one dayit hits them that they are and they then have to deal with it

where those brought up with it xan deal with it have a so what attitude

For ds I do use the word that yes he is disabled but can understand why some prefer the word differnt but for him there is no getting away from it he is disabled but the wheelchair /splints etc yell that to

And yep lol we get the blue badge rant when we use it and I jump out the car someone came storming over the other day had a go so just opened the boot and said yu want to lift his wheelchair out for me otherwise shut up and piss of.People do forget that dc are and can be disabled to

i do find it hard saying they are disabled and prefer to say different i think dd knows really as she has the wheelchair to use when legs are really bad but ds is too young i think he just takes it all for granted and assumes all kids his age have to go to hosp etc. maybe i should be more up front about it mt dd doesnt even know she has to have big op in next yaer or so as her chest prob has got so bad as im scared of worrying/upsetting her. perhaps its something i need to start addressing

I just went onto my dh's employers website, where they are celebrating the fact that they are in the top ten uk best employers to work for if you have a family, and specifically a disabled child, LOL! Must be my mistake then that dh got remprimanded for asking permission to leave an all day meeting for a few minutes to check on his ds who had been rushed into hospital in an ambulance! I am so angry about that, and everything really.

I know I have not addressed ds's condition properly with him, I feel like I am protecting him from it, but I do remember you posting about your disabled friend rtb4. I hold that fact of acceptance being so important in my mind all the time.

We have got the appointment for the clinical pyschologist starting in half term, to address ds's depression, and help him develop coping strategies. The first appointment is just dh and me, after that they will start assessing ds, another thing to do donw on the dla form I guess? So we will have eds, frequent dislocations and suluxations including c2 and c3 in neck, debilitating joint pain, 40% lost school time, depression and anxiety, risk assessment to enable to be in school and extra adults employed in school for 1 to 1 care, twice daily physio, neurally mediated hypotension, urinary incontinence.... am I on the right lines? Presumably if I am describing the bad days, it is having to roll him to put his collar on, carrying him to toilet, in and out of bath and shower, inability to walk without severe pain, or just inability to walk at all, daily maximum doses of pain relief, urinary incontinence....what have I done to him.

Sparke I cried when filled the form in then cried again when we got awarded the dla without any quibbles after Reading about others struggling to get it was a slap on the face that others could see it

guess I tend to use disabled as ds has other issues going on so maybe easier for me to accept that term or word though thought that I passed some of this on still hurts

hmm as for ds he has never really known anything differnt though there is tines when he has moments when says/signs I can't do that or someone asks him if can do something and he shakes his head .

Not sure how things will pan out for him as he gets older he will always need wheelchair for outdoors think I have now come to terms with that and he finds it gives him more ablity to do things especially with powerchair where he can keep up now.Were looking at after this year bringing computers in to of he stats struggling with holding a pen

I'm going to be honest know things ate differnt for us all I struggle with the thought of that talking might not really take of properley :( ANC part of that's down to eds in the jaw and afectong the muscles in his face

Sometimes it is just heartbreaking isn't it

I cried too when I filled in that form.

We are not actually claiming as dd did get a lot better just about the time when we due to resubmit (having first been refused, then taken time to recover, then gone round all the paeds etc to get new round of supporting evidence). But just having to fill it in was horrendous.

As for the disabled word, I am taking a Stonewall approach to this:
Some People Are Disabled - Get Over It.

Because I have always noticed that the people who are most anxious to protect dcs from thinking of themselves as disabled are the people who want to deny them help and who themselves have a very negative attitude towards disability. People like the rheumatology consultant at the hospital (not the nice one we usually see, but the other one), people like dd's headteacher who refused to let her use the disabled loo (and pulled me up whenever I tried to use the word disabled of dd).

Yeah cory we had that about letting ds see himself as disabled I laughed and pointed out he can barley walk 30 yards outside or so he wears afos and boots ,he has very little speech can't hold a len except like a dagger can only draw a wobbly circle (he's year 1) he still soils himself needs nappies at night suffers pain is behind his peers can't read etc

Was like lol what more does he need to be disabled they soon shut up then

I want him to be postive with so what attitude so we go to multi sports for dc with sn wheee there's other dc in chair and adults to as role models

At 5 .3 now I have excepted he won't get better this is as good as his pd will get no amount of physio can fix him will just hopefully stop him getting worse

But please be aware am not cruising anyone as understand how hard it is to see dc As disabled and how sad it makes you feel .For me it's easier as ds has the other issues so more obvious iykwim I noticed it from a few months that ds had problems he did not walk till he wAS 3

But honestley try for dla when you break it down you see just what have to deal with them and us .I use it to buy what he needs lighter wheelchair a powerchair special cultery his afos because sick of nhs being slow and done on the cheap .We brought yearly zoo cards with it as our local zoo has sn playground and signs in makton all over

We got hr moblity and hr care though we did have quibble they gave mr care at first but they looked again agreed due to not sleeping the nappies at night and the epilepsy they gave it hr we now have for 5 years

we got first at 3 for 2 years.But now got 5 year award I have recentley ordered a car on the moblity scheme so we can take his powerchair out ,Role on January

i found it so hard filling out dd and ds dla forms,it just looks awful all written down the big list of all the conditions/problems, the medications and how it affects them every single day of their lives, ds got high rate for both (like you rtb4 the waking up at night, usually 3-4 times in pain, still in nappies at night and sometimes in daytime, migraines that are triggered by bright light or low blood sugar and leave him in pain for hours then nearly unconcious for rest of day and the really severe allergies-he cant even sit at a table if people are eating what he cant have and all food stored and prepared sep) its so difficult and of course the eds on top of it, pain and dislocations.

dd got high rate mob and mid rate care, her probs are more to do with severe leg pain and cant walk far and when she does manage bit further and legs arnt too bad she faints due to other probs.its bit of a nightmare i had to make sure i wrote down every single last detail about everything i had so much extra paper with the form.

had rubbish morn so far turned light on this morn it exploded and fused house i had to try to fix it phoned ex in tears begging him to help but he couldnt then had to pick up a million shards of broken light bulb!
seems funny now but at the time i was in floods of tears and just couldnt cope am feeling very fragile at moment feel like am heading for a breakdown.

can i ask some advice.

dd2 wants to start gymnastics. in fact has been looking around at places. she has some degree of hypermobility. i am quite confident she will be ok, but what should be careful of? would like her to be more active, and build up some strength around her joints iyswim. she has had a couple of dislocations in her life, but nothing severe. all have popped back ok.

elbow pic

knees

dd1, not dd2.

hmmm not sure what to say i think its different for everybody with eds what they can/cant do.my dd and ds def cant do anything like that they dislocate a lot dd hardly even does much pe at school as so much she cant/shouldnt do.

HOWEVER-if your dd has quite mild hypermobility and not much/no pain maybe it would be a good form of exercise to strengthen her. we have specific physio to do but for you gymnastics may be helpful and being hypermobile would prob be something your dd would be very good at.

Do you have a physio or see a specialist that you could ask for advice re this? and maybe speak to the gym teacher as well?

sorry cant really be of much help id hate to say oh no dont do it (just because my dcs are not allowed)when it could be something your dd would enjoy and would help her or to go the other way and say go for it then your dd has dislocation.

best to see if you can get opinion of somebody medical who you trust has good knowledge of hypermobility, hopefully you will be ok to go ahead

its never bothered her, except for when having to stand still for choir then her knees ache loads. she is very bendy and supple, and i think that maybe it will be better for her than not doing it iyswim.

dd4 specialist at stanmore did suggest gymnastics for dd4 when older, as she is very supple, so thats why i am hoping its ok for dd1 as well, who isnt as bendy as dd4.

sounds as if it could be ok then and would prob be a good exercise for her-sorry if sounded a bit over cautious i think iam so used to my dcs probs with their eds and knowing how much they dislocate that i was worried your dd may be the same but from what you said i would think itd be ok!

AFAIK dd's dont have EDS, just hypermobility. dd1 has had some dislocations (usually by smaller kids tugging on her arms), but is very active and no stopping her. she is 10now.

Misdee chat with gym teacher I did gymastics up to my mid teens at fairly high level even now at 37 I'm very supple despite being overweight

I have also ds2 who has eds but not really suffered with dislocations who has started playing/ training with the school rugby team

Dd Is also another sports mad one and likes gym where flexablity is good

think chat with teacher is best brt and how good is dd at knowing when she is pushing to hard?

Mine are all affected by eds but in differnt ways mostly very little problems except got ds3

hmm question for bowels I'm beging to think the Eds us affecting ds3 bowels as he poos himself quote regulary without even notcing he has done it am I right in thinking that as bowel is a muscle it can be affected by the eds .Know slightly tricker as ds has other issues

Bit hope everyone had s good weekend