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.

Yep it did thank you, meant to say so, but got distracted by kids and puppy etc. My ds is extremely hypermobile in hips, shoulders but compared to your ds he is positively rigid. My ds can do the foot up to shin thing, but thankfully he is not so hypermoile from side to side so less sptained ankles. At the moment for my ds it is more problems with the large joints, smaller joints may be hypermobile and he had dislocated fingers etc, but on the whole he doesn't complain of pain in them, it is the spine, hips, knees and shoulders where he has most of his troubles.

Same areas as ds3 along with fingers and shoulders he is unable to hold a pen in correct grip due to the hypermoblity

Ds wears afos stop the side to side but his feet now turning it not sure if that's down to hips or muscle issues

My biggest problem ds3 is non verbal so can't say where hurts but something does because he often crys out especially when he has been walking or the pains bad at night

Am going to ask genectics if they can refer or least confirm the Eds so can take it back to the paed

I think that sounds like a good idea, you need a diagnosis so you can plan future monitoring and care. have to pop out now, but will be back on later.

I just reread one of your posts, I must have missed it. If you can extend your skin that far, I think 2 to 3 cms is quite a lot, and you have the palete issues too it sounds like a definitive diagnosis to me, that neurologist really didn't know what he/she was talking about. I should bloody (sorry to swear) well hope they changed their mind and referred you to a geneticist.

ds3 is seeing genectis as he has several issues and its wondered if there is a link or he has just been bloody unlucky ,

Ironic dd is the one that scares easy she had a cold sore impertiago almost 2 months ago and you can still see where it was hmm me thinks lots of pictures of differnt kids when go se with ds2

opps thats ds 3

I am still surprised about all the different things that are connected, even 20 years after having a diagnosis for myself. I know that EDS may not explain everything that your ds has, but I bet it will explain a lot.

I don't know about you but having a label and an explanation linking everything up eases my mind especially for my ds. Some professionals give you a lecture about how labels are not helpful, I would always argue label are helpful they provide support, explanation some element of clarity, something to hang on to, labels are not the problem. If there is a problem it is with "labellers", who use the condition to get out of their responsibility to the child, like some members of staff at my ds's school who would rather exclude him than alter their practices to include him.

Yes I'm of the same mind about actually it's easier to give it a name ds for. Long to
e had GDD hypeoblity low muscle tone as labels but trying get any help was hard work recentleu got Cp dx and the diffeance when you mention why

Just got confirmation of ds going into hospital week on friday for ga to have MRI of whole spine, at least we might get some sensible answers and predictions about his prognosis now, very scary stuff though. Might not like the asnwers I get and scared, very scared, cos no matter what he is my perfect little boy, and I just want to be able to love him forever, not lose him. Sorry to be down, I do know this is the right thing, but so hard.

Your allowed to be down and scared I wAs and still am whe. Ds had MRI looking at his head but least if you know you can work with it

I know you are right, better to know the full extent of what we are dealing with right now, and what we can worry about later instead.

Yep can get some idea of long term know if going be a problem and what can do to. Head it if or at least delay it

They are going to look for how much space he has around his spinal column, and how likely he is to sever it in onw of his dislocations, and also to find out what is happening in his blower spine to cause numbness in his feet and urinary incontinence, they think imflamation mahybe damaging the nerves, I have no idea what they will say about that whatever they find.

No wonder your scared I'm pretty much sticking head in sand but do know need to confirm about ds3 for the very same reasons as your facing 9 dislocations so far no where major knee caps fingers shoulders thumb elbows

But do know he sublaxes his hips rotates in or out sane with shoulders

they said how ling for the results follow up?

Have got an appointment with rhematologist on 16th sept, orthopaedic surgeons will ring as soon as they have reviewed it, I am guessing sometime the week after.

good luck we have genetics that week so be intresting see what they say.Were still waiting on ortopeadics as our appoinment got cancelled

Have you not heard about a new appointment yet? we always het a new appointment at the same time that they notify us of the cancellation. Hope it is not too long, it just drags the wholoe process out so much.

Have to get my head round tackling telling ds about next week now, he is going to be scared no matter how I broach the subject, poor little boy. Will be able to tell him that both dh and I will be there, I think that will help, hope so.

No were still waiting on one there contact as soon az one becomes available they normally give about 6 weeks notice

Ds3 had a ga for MRI recently for him the worse was putting the cannula in .they gave it through the cannula so no distess worth checking this rather than mask .he went out very fast did not take to long though because he has seizures they gave bigger dose so took him while to wake up

Was bit groggy think wAs 6 hrs before we got home but lots went home quicker next day was fine

But your be glad have dh there I hated him flopping then walking away

Think we will have to pin him down to put the cannula in, have already been worrying about this. This is the child who pulled his last innoculation needle out before the innoculation was finished, despite me holding him quite tightly, he doesn't do needles well, never has, you should see the hysterics we have over a splinter!

6 weeks after the appointment is given seems a really long time, where in the country are you?

im in east herts but think just been unlucky one appoinment at local i had to cancel on day as ds3 woke up with D&V so which then shoved me to back of list and said Dr only works one day a week .

The other is at ADdenbrooks was canceled for september about a month ago and were still waiting for date Dr no longer does clinic on a paticular day then theres annual leave so now likely be October which be almost 16 weeks from referal .

That is so frustrating, you could prehaps ring Addensbrookes and try and chase another appointment?

I was first seen at Addenbrookes 20 years ago by a Dr Bright, he gave me my first diagnosis of BJH, which was later revised to EDS. Small world.

tried taht and they confirmed is only one dr we can see that deals with joints so going sit it out till we seen genetics, we already have dx of hypermoblity so me thinks just case of changing it to Eds

Good luck for Friday

I have just read all your messages iam having a terrible time as i have eds (hypermobility) and my 3 children do too (my oldest also has pectus excavatum).we are having a dreadful time dd1 cant walk far gets really tired and pains in legs, ds is still in buggy all the time, gets severe back pain, falls and dislocates thumb/fingers a lot. I have a double buggy but due to having injured my arm i can hardly push it anymore so hardly leave the house, iam really fed up and just dont know what to do anymore everything is such a struggle.

Is dd1 able to acess wheelchair at all ?.we have bog standard one of nhs and thanks to someone on another forum ds now has a powerchair and has given him a new lease of life is now able to keep up with his friends as was struggling to self propel

Yep ds 3 had trip to Asnd E yesterday due to dislocated shoulder at Sn club least it shows the proffesionals how easy is he just tripped over when holing a hand ANC the jerk was enough