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.
Here are some suggested organisations that offer expert advice on special needs.
SN children
I get the feeling that the difference between BJH and EDS hypermobile type is a spectrum rather than a different diagnosis, but heh what do I know. Since both my ds and I have had multiple dislocations and sublocations, constant pain etc it has been diagnosed as EDS. Actually initially ds's diagnosis was piggybacked on my existing one, but unfortunately there is no doubt for him now anyway. He has a high score on Beighton and Brighton, familial history, frequent dislocations and pain lasting years now. Poor kid 
You do not have to have stretchy skin for EDS diagnosis, Ds and I have pretty normal skin, although I am hoping just stretchy enough to ward off further wrinkles...there has to be a silver lining found somewhere 
Just out of interest, does your ds sweat a lot, my ds always does and always has even when a tiny baby he always smelt of vinegar, not smelly yet as only 7, but I don't know if this is connected somehow?
SparkleRainbow, GP refuses to refer to GOSH and the four paediatricians we have seen all say there is no need 
DS is nearly seven and has had constant pain since (I think) 9 months, definitely 18 months when he became a bit mobile. He really needs a pain management plan. He also has a diagnosis of Co-ordination Development Disorder that I was only told about last week, although it was given in 2008. He has a speech delay/problem (no clear diagnosis as yet 
. He also has soft, velvety, stretchy skin, pain and hypermobility in every joint, wears Piedros and inserts, uses a wrist splint to write/draw and is absolutely gorgeous and incredibly brave!! Oh, and he gets very clammy all the time, but weirdly, feels very cold when he eats.....
DD1 is hypermobile in every joint, but only pain in feet/ankles/knees/thighs and lower back. Wears Piedros and inserts, uses a wrist splint to write. Has some Marfonoid features, but I am laughed at when I mention it.
DD2 only has pain in ankles but all joints are hypermobile, wears inserts, just about to push for Piedros, would do well with a wrist splint, but not allowed a referral to OT as 'not severe enough'.
I feel they would benefit from being seen at GOSH, even if only once, just so they would have been seen by someone who really knows what they are looking at. They need some kind of plan. Not me chasing sporadic appointments till I could cry in frustration, but an actual plan where they are seen and treated by the appropriate people. Sorry, didn't mean to rant 
By the way, and they all sit exactly as you describe!!
MrsVictor, I am so shocked and so 
for you. This is all completely unreasonable.You need a pain management plan as much as we do. Do you know what the gp's refusal to refer to GOSH is based on? If they won't refer to GOSH how about referring to UCLH hypermobility clinic, on the basis of seeing a particular expert in the field, the GP can do that without any consultants, and they specialise in Marfans, BJH and EDS hypermobile type etc. Where are you in the country, because I think Sheffield University Hospital also has a hypermobility clinic where they specialise in diagnosis.? I wonder if you can write to the clinic yourself, explain everything in as much detail as you have, GOSH have an online referral guidance for medics to follow I downloaded it last week for my GP, so you could included all the information they need, and explain that you are having to write to them yourself as no-one will take you seriously, maybe they will write to your gp and say they would accept you all? Could be worth a try, even if it gets nowhere. I am so sorry and so angry for you.
Roundthebend4 - it is official I am IT illiterate I don't know how to get to your pictures. I can't find any links, what am I doing wrong? I don't know how to post the picture of my ds either to show you.
I have always wondered if the sweating it connected somehow, my Dad did it too, and so do I, we think we inherited EDS from my Dad, although he died before I learnt a lot of this. He did have low blood pressure like me and ds, I think he didn't respond to epidural pain relief either, he did have funny hips too. (and I miss him still )
Roundtb4 I am sure when you talk to the genetists at GOSH they would be able to refer you across to the rheumatologists there too. I would hope so, it would be bonkers if they couldn't. I know what you means about disagreeing with professionals I actually said to my rheumatologist last week, that with no disrespect intended she didn't know enough about EDS. I don't acre about me at this point, my points are already damaged, some beyond repair, but everything I learn now could help me protect my ds. At least my gp is fantastic, I was able to say to him that it was clear I knew more about my son's condition than the the Consultants who were treating him, and I knew I didn't know what we were doing, so could we please see someone who did. He agreed with me.
I am feeling very down about it all today, feeling terribly guilty for giving this to my ds. He is such a wondeful little boy and I don't want to lose him.
Hope these help, there are many on the net, some of which say skin element is needed for EDS some don't. I was diagnosed by Professor Grahame, a long time ago as having ESD and I have never had the kind of stretchy skin which you can see demonstrated sometimes. I do have smoothy velvety skin as does my ds, and we do bruise easily, heal slowly and I have stretch marks from puberty as well as vast number from pregancy by badge of honour
www.newtons-online.net/documents/EDS%20b.pdf
www.ehlersdanlosnetwork.org/hypermobility.html
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