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.

He is 7, 8 in April. I think he would love to meet other children who have hypermobility and see that he is not alone.

It might not be her hips, but it would be worth watching wouldn't it.
I am glad you are finding it useful.

How are you all doing, not heard from any of you for ages.

We are ok, had a bad couple of weeks but getting better now (all 3 dc unwell and i got v v depressed)

feeling bit better now though.

sorry couldnt really write much saturday as was so busy but didnt want to just write nothing!

We have had an exhausting couple of weeks iam so glad it is half term. Ds has been unwell again and is on antibiotics and dd1 has been getting terrible pain in her arms,hands and legs. She has also been diagnosed with POTS now rather than just the vague 'intermittent tachycardia' they said she had previously due to her fainting.

I have been so busy its been an endless round of doctor/hospital appts and tomorrow we all have to go to the eds diagnostic centre (ex as well) as they want me and him to have biopsies to check it def is hypermobile type that dcs have due to problems with dd1 fainting and the fact they have got it from both of us. Im not looking forward to it (am a bit squemish when it comes to needles etc!) but its worth it for the reassurance that nobody has one of the more dangerous types of eds.

Hope you are all well and that your dcs are doing ok?

Sparkle have you had any luck with either the school place or your ds application for dla?

Hi Ariane

Wanted to say good luck for tomorrow.

Have got tonsillitis again, so more anti bios and more feeling like....Please fill in the blank

Where are we...well no change of school place yet, application in, rumours of funding for TA support for ds, but still rumours at moment, nothing definite.LA still hoping I will disappear aqnd take my complaint about disabiity discrimination with me...but not going to happen I am going to fight this. Have written 14 pages of letter for reconsideration and 35 more pages of evidence was going to post today, but have to be tomorrow now. Had series of dislocations and general joint pains for ds. I am crippled with them at the moment with the temperature.

I have been feeling so depressed too Ariane, so I know how you feel. Take care of yourself x

Sorry to hear you are unwell sparkle i really hope you feel better soon.You have certainly been busy with your letter/evidence, i remember having pages and pages and copies of medical letters when i was trying to sort out dds school place a few years ago, it really was exhausting but def worth all the hard work and i really hope you get the place for your ds that you need.

Had our appt today at the eds clinic we were there 9.30am till 1.10pm so was quite tiring! Had all the usual examinations and they took lots of photos again for the files. ds seems to be the worst of the 3 but i think i knew it already, they have just said more physio and better pain management is the way forward.

Me and ex had our biopsies they want to double check it is not a rarer type of eds because the dcs are so badly affected, unfortunately i didnt cope too well with it and fainted it took 25 minutes to do, the local anaesthetic was really stingy and i could still at one point feel a nasty sharp feeling, i thought i had done ok untill i got up after and promptly felt ill and suddenly couldnt see anything. after a cup of tea i was fine though just a bit embarrassed!

Ex had to have his stitches redone a couple of times as they just kept ripping open each time they tried to do it.He was fine though-much braver than i am! Still, at least my fainting meant he helped me for the rest of the day with the dcs and we had quit a nice day, untill he had to go and meet his girlfriend....

It takes a year to get the biopsy results! so we have a bit of a wait i think its a funding problem with the eds clinic but at least its done now i will just have to keep my fingers crossed for a long time.

A Year!!!! That seems incredible...wow! Hope it is worth the wait.

I am gald you had such a thorough appointment though, that is really good. The idea of them taking photos is incredible to me, our rheumatologists seem to think it puts them out to actually examine ds!

Had bad news yesterday, my gp chased the ortho referral only to find out that the referral was turned down in December, no explanation or reasons given, so GP is chasing it again to get them to change their minds. In the meant time he described ds as failing to thrive in terms of weight gain, so contacted the community Paeds today, and I got an appointment for next thrusday to see them at the local hospital, they even hinted that they may take better charge than the rheumatololgists do.....but we will see have received many empty promises over the years. Had good news the day before though, I have scared the LA into agreeing to fund 25 hours plus 5 hours at lunch 1 to 1 support for ds. It is a political decision on their part, so easilt taken away as ds does not have a statement, but they are scared I will go to the press over way they have cared for and handled ds. Does make ds a more enticing school pupil though, so maybe we will get the school transfer we want....maybe.....broken promises there too so have little faith!

Thinking of you Ariane...take care. x

I'm still here too, peeps. Just struggling atm with things going on here. Wanted to pop in and show my face, so to speak - and see how you all are.

I'm still here too. DS3 has reflux so up to my neck in washing and waiting for a referral to the paeds. DS2 has been taking a few wobbly steps in the last couple of weeks which is brilliant although I will thump the next person who says "I told you he would catch up". Some people have no idea. Off to catch up with what's been happening on this thread.

Ellie great news that little ellie junior has taken a few steps. Sorry about the reflux, it is a misery isn't it.

Hi Deepbreath, how are you doing? It has been hectic here too, but they are back at school today, fingers crossed ds will stay there all day and I can get some cleaning, washing, doctor chasing done!

Ellie, lovely news about the walking! Hope that reflux settles soon.

Sparkle, how are you doing? Did your ds manage at school? Dd was shattered this morning and needed a lot of jollying along to get her to school but we did it in the end!

We are ok thank you. Ds seems quite good at the moment, all things considered, although don't want to jinx it by saying that

He is really tired at the moment though, even after half term, he does look very pale too, well paler than his normal quite pale face!

He is seeing the paed on Thursday. We will see what she says. It is the same paed who saw my dd2 as a 6 week old with a heart murmur and I liked her, the GP rates her too so I am hopeful. Maybe she will kick the other consultants into gear, then again maybe I am too hopeful.

I did some more research today looking at links between EDS and failure to thrive, bladder weakness, poor handwriting etc. I found lots out there linking all these and more, including not being able to sit still, calcification of cartiledge (something I have) and depression. Some anecdotal, some published medical reports. I also looked up dyspraxia, which is something the dla dr wrote in his report, and ds id absolutley not dyspraxic, all his symptoms are related to eds.

I also researched the two orthopaedic surgeons who work with GOSH and specialise in spinal issues, they definitely seem the ones to take ds on. I just need to get his rheumatologists to either press Mr Marks based at the Royal Ortho Hospital in birm to take him on, or just go to gosh. I can not believe we are back to where we were in August.

Anyway, how are things deepbreath?

Which buggies/wheelchairs do your dc have? DS2 still fits in a normal buggy but he needs the support of an sn buggy. Also DS3 needs to be accomodated somewhere. Wheelchair services have suggested the tom cross country stroller in a double version that we'll have to pay £800 towards but it's the size of a tank and we don't have £800. I feel guilty not letting DS2 have it if that's what he needs but it's going to make my life so much harder.

Sparkle, hope your DS's paed appointment goes well. DS2 has a really good paed and they are worth their weight in gold.

We did't have a stroller other than the standard. When ds got too big to push, he just had to walk, and we went slower, or not out at all. In hind sight I could have made life mush easier for myself and him if I had known about alternatives, of even mn!! But I didn't. Don't feel guilty about it ellie, it has to be feasible to even be an option, and £800 for a too big stroller just isn't feasible, and therefore isn't an option.

Ellie, is there anywhere that makes supports that could be used in a normal buggy? It is a problem that lots of people must have experienced.

Dd had a normal buggy til she was 4 (it looked ridiculous, her knees were touching her nose!) but it was better than trying to get her to walk. She just couldn't do any distance, she still can't. Her physio referred us to wheelchair services, and we had a Maclaren Major for a while. She is now in a Blade Plus wheelchair. Sounds like she doesn't need as much in the way of postural support as your ds though.

Got a loaned neosmart for ds today, and it is fab. He grasped how to use it straight away, think it is really going to help. He was so proud.

It being this quiet on the thread is generally not a good sign. How are you all?

Is a neosmart like an alphasmart? I had one of those at college and it was brilliant. We're ok, still waiting for ds3's paed referral for his reflux. I'm dreading getting him weighed tomorrow because I think he has lost weight again with all the puking. If we don't get a letter tomorrow I'll be nagging the HV to chase it up.

DS2 walked round asda yesterday, holding my hand most of the time but taking a few steps on his own sometimes. He was shattered afterwards though and fell asleep in the buggy. It was lovely doing something "normal" with him and he loved picking stuff of the bottom shelf and saying "I think I like a those".

I talked to the physio about the buggy and she's going to see if she can get a special insert to go in a normal buggy to give DS2 more support. We'll probably still have to buy a new buggy but at least it will be smaller, lighter and easier to fold than the SN one.

"I think I like a those" That is so fab to have moments like those, so important. I will keep my fingers crossed for you with the physio and the better buggy options.

Neosmarts are made by alphasmart, so I bet they are the same thing. Ds loves it. He subluxed his ankle yesterday, and I couldn't get it back in, so he had to come home from school. Didn't take him to the drs/hospital would be a waste of time, the joint eventually went back into place on its own anyway.

The paed was lovely by the way, she is going to attempt to move the rheumatologists forward in finding an ortho surgeon. Shan't hold my breath though. Still we wait.

Have written a letter to Director for child services at LA, and copied to our MP to try and kick them into action. Emailed yesterday, no response yet of course, but we shall see.

Glad the paed was lovely. I hope she manages to push things forward for you. How is your DS's ankle now?

Much better today thank you. He is suffering from urinary incontinence a lot at the moment, but got a call from the hospital at lunchtime and they have booked him in for the bladder and kidney scans on Friday morning, so the paed is being true to her word and pushing this forward already.

Have you had the baby weighed yet, has he lost? Or is it tomorrrow you are going? I have lost trackof time. I have been completely thrown by starlights thread!

hello, sorry it has been a while again ive literally been getting up every day, getting physio done then out all day every day school/doctors/hosp etc etc and havnt had a spare moment!

We havnt had the best time (again) dd1 keeps getting pain in arms and hands so shes been quite unhappy and all three dcs have been unusually tired and run down (even more so than usual).

Had a rubbish weekend stuck in the house desperately wanted to get some fresh air but it was a situation where dd1 wont walk for more than a few mins before she is in pain and my arm was bad so couldnt push buggy so even with my ex to help we couldnt manage to push/carry all of them to enable us to go out.

I have appt tomorrow to see a rheumatologist about my arms as they are so painful now and im hoping they can do something to help.

hope you are all ok iwill have a proper read through the posts tomorrow to catch up as have a lot of housework to get done tonight (its all been neglected recently in favour of resting).really hope you and your dcs are all getting on ok

Hi Ariane - I am so sorry you are having such a rubbish time.

I am in a bad place today, so I will come back another day soon and post properly, but just got the letter turning ds down for dla after reconsideration, and that on top of everything else is sending over the edge today. Can't cope, want to give up now. Sorry

hi

Sparkle im so sorry to hear ds got turned down for dla maybe time to tell them you want to appeal and leats then appeal wis ethe forms are seen at last by someone with proper medical training till then its just a lay person .

Arriane .

the genetic clinic for Eds was it at Harrow ?

And now for some good news in aroundabout way .After being bad with my hip morphine etc the lot.There was some phonecalls made and I had a call from the Eds gentic service and ha discussion with them and the upshot is myself and Rio are both being seen by them at last and roundabout way that he got appointment of the back of me rather than otherway round

They was very intrested in teh fact my family have had very early heart attacks and been warned to expect skin biopses etc and from there we should get dx and will maybe refer to gosh for Rio .Lady we spoke to on the phone could not believe that he has been turned down loads of times

hi elllies thats good news about walking round the shop .Rio hates it as everyones so high and think he finds it scarey being knee high to agrass hopper