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.

But they can't just leave him in limbo like this, still don't understand why he can't have a paed rheumatologist, physio, ot, SALT and anything else he needs, even if they can'tlink it all to one condition. Have you looked at the US eds site a posted a link to a while ago, they have a long list of connected symptoms, it would be interesting to see how many you could tick off,and there is multi connective tiisue disorder and overlap disease to consider too. Am I helping.....I hope so.

ty will go look

Ds does have a paed though only 6 month reviews.we do havephysio and Ot as well as s&l as hes in speech unit.Also have orthtics on board as she was shocked at his gait and hips,knee problesm

but never seen rheumatologise at all never even been talked about

But now have to wait see if gentics does talk to anyone or not failing that we just continue as we are with physios good but does not have massive knowledge that a specialised team would do .Am considering seeing of can go private if gentics does not talk or they refuse

God it is all a mess isn't it!

yep so basically some of the proffesionals( eg ds sw from disablity team be back to blaming me for something i should have done or something im not doing right( ignoring he fact that somehow bringing up other 3dc without same issues as ds3)

Os basically iahve a little boy who cant be pigeon holed into one thing or another so wer eleft whistling in the wind for another 3 or 4 years

Not ok, really not ok. Time to write to PCT to ask for joined up thinking and eveyine to start takin responsibility and stop passing the buck!

Mind you it is all another fight...and I have had enough, how about you?

i had enough of fighting really have and if i push it will have bloody ss on my back saying im trying to make out that ds is disabled and that im allowing him to be disabled ( convinetly they forget that ffs all the proffesionals that know him say he has very real problems )

So ds is n ot meant to see himself as disabled , just as a little boy that cant walk far cant really run( he stumbles like a toddler , cant hold a pen properley cant talk infact last test showed no speech to even score him so he is below the bottom 1% oh and struggles with understanding spoken language .But hey hes not disabled so what the feck do I tell him

To tired to fight anymore i seem spend my life fighting. need sit back and take a break from it all.I litterally sat there crying after the phonecall .Know what i should do and in some ways not going to change the treatment but be nice to have a name for it

though do wonder if he needs physio that has specialist knowledge of Eds

how do i tell him if he ever asks why .that im sorry son i have no clue why you have

Hypermoblity syndrome
Low muscle tone
Verbal dyspraxia
Oral dyspraxia
Global delay
Epeilepsy
Mishappen palate
Small legs
large head
short height

EDS explains hypermobility, low muscle tone and mishappen palate, for a start, and those just happen to be one i know. This is so frustating for you. I completely understand why you cried after the telephone call, you need a dx, it needs a name to help you eal with it. I am so sorry, it is all pants!

sparkle think the bigegst problem is everyone seems be that hypermoblity and low muscle tone should not affect him to the point it has.

HE uses wheelchair, a 5 minute walk for child his age takes 25 minutes for him etc they just want to pigeon hole him but he does not want to be he likes to stand out

i know that it can afffect badly but trying to convince the proffesionals that it can really cause that many problems is like arghhhhhhhhhhhhhhhhhhhhhhh

I have had similar conversations about my ds with drs. I would say eds affects me as they would normally expect, but ds is much worse than me, and they don't seem to get their heads around that at all.

Arghhhhhhhhhhhhhh from me too.

next TAc meeting im going to put everyone on the spot and ask them to suggest what i should tell him

becuas ei think telling him your just slow be dam site worse than saying no its becuase your disabled

Ds walks at pace of a 18 month old and runs like a child thats just learnt to walk

DS3 stayed the same weight on monday but after a visit from the bf counsellor he has now put on some more so he is almost 8lb. Still 13oz below his birthweight but we're getting there.

GRTB - ss used to blame me for ds2's issues, saying I cuddled him too much and that he would learn to crawl if I stopped DS1 playing with his wooden railway and spreading it all over the living room floor. In the end I decided that the 2 hours a week respite we were getting wasn't worth all the grief so I said I didn't want them involved anymore.

I have dyspraxia and DS2 has EDS so there could be a genetic link between the two.

Sparkle - that's awful, you should definately appeal. I agree that you should get copies of the reports from the professionals first though.

Thanks Ellie, I reckon I can put together a better arguement for reconsideration and appeal if I use their own words or lack of reading the reports against them, or counter rubbish reports with better ones.

I am glad the baby is doing ok, cuddles from me please

Dyspraxia too then maybe..... that list could be more linked than the medics think then grtb.

ellie

Were not even getting any and truth they shall be told to piss right of out our lives downside is i need them so that ds can get some support for holiday schemes etc this summer so stuck between rock and hard place

but on the good news front just heard mynew car arries the 8th ok its motorablity and i can only use with my mum/stepdad out till i pass my test but wahey when i do will be so much more freedom

Fantastic news.....well done you. I have just registered my request for reconsideration, with reasons and evidence to follow, I have spoken to physio, who was not asked to do a report by dla, so have demanded that dla request a report from her. They read me out the whole determination reasons and they have clearly not read the application form at all, so someone has screwed him over......getting angry now as well as upset.!!!!!

hmm better get copy of physio report and send it with them.Good on you for not loetting them win

Im just getting my breath back and will then tackle who i need

and fingers crossed looks like the family fund might even fund some of my lessons.Just got to wait for my driving licence then can book theory

Yes I will ask her for a copy, ds see her next week anyway.

Yes were of to physio tomorrow so no school for ds3 :( or peace for me his attendence is pants not for sickness just sheer amount of hospital appointments

Then next week ds2 is of as has bowel prep Monday so be in loo all day.Then addenbrooks allday Tuesday with ds2 then home and then ds1 has addenbrooks Weds then arghhhh dd has hospital Thursday

sick of hospitals trips

Blinking heck, sooner you get that licence the better!

We only have two appointments next week for ds, and that is more than I can cope with at the moment. As an aside.....boob really hurting this afternoon, but no sign of redness so not an infection I hope! Lougle has helped ,e with some brill advice on how to phrase my reconsideration request and appeal. There are some lovely people on here.

Ds lost 40% of school year last year due to pain, hospitalsiation and appointments......! Incredible really.

Yes without the help had from here ds3 would not be in speech unit or even gas the statement that he does

Ironic in some ways that I'm lucky to get a Motorablity car and fingers crossed lessons provided because ds is disabled and I'm sp carer on benefits though would give that up in heartbeat for ds nit to suffer

But yes being able to drive will make life so much better for him and me and lol does mean when passed no more needing to lug tent on trains I shall have loads of room it's mini bus size

Got a fab letter from GP supporting application to move ds schools, also talking about his falls, and the damage that happens when he falls.....too letters in one.....I see you dla and raise you evidence!!!!!!!!

Might be feeling slightly more optimistic today , seriously this is because I prioritsed my fights in the wee small hours last night.

1. New school fight - this will improve ds medically and psychologically, and educationally - have the greatest positive impact on is life, so has to be the most important

2.NHS doctor fight - reality is no dr can take away the eds, we need the ortho surgeon, asap, but we rae always going to managing, so secondary fight.

1. LA discrimination fight - may need them kicked back into touch in future for ds
2. DLA - sod them, they are uncaring thoughtless arrogant so and so's. I will do the reconsideration and the appeal, and if fail at appeal I will apply again, but i refuse to let the ** bring me down.

Mind you, really trying to be positive as it is my birthday today!