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.

I think I have decided to try and get the flex mri done asap, if ds will comply, then as the results will be electronic they can always be shared with gosh if the analysis turns out to be less than desired.

I have some questions about flex mris, does anyone have any experience?

bump?

crashes in opps sorry did I get anyones toes

Sorry can not help only ever had normal Mri .How is ds with inclosed spaces you do wear ear defenders but can still hear some of the noise over it .

hope everyone else is ok and just enjoying the summer weather

Enclosed spaces, loud noises......not good really, he gets freaked out in one lift in the hospital because he says it makes funny noises and doesn't open the doors fast enough!!!!! Still we have to do it, he gets ear defenders and we can bring a cd for him to listen too, I was thinking Queen, he is a bit of a rocker, and that turned up loud might help with the noise, although not lying still

It is the flex and extension bit I am unsure about, and haste images???????

It has gone very quiet on here...........helllllooooooo anybody therrrrreeeee

hope you are all ok.

hellooooo your ok your not answer to yourself yet .

did see this which may explain a bit more

www.sikermedical.com/services/mri/mri_cervical_flexion/

Thank you thank you, will check that out as soon as I have made the kids lunches.......got up early today and everything.

quick one mums checked post for me and wa sone from hospital we now have it in writing whole family have type 3 eds but ds has something more what he is not sure

Remind my stupid brain, type 3 is hypermobile type, not classical yes? What kind of more.........and more as in as well?

You name changing again THC?

I am having a really, really, really cr*p time, self esteem hit the floor, exhausted from fighting battles and getting niowhere, am justwaqnting to be able to hide at home with the dc next week.

yus im now keeping this one .Yes it is the hypermolity type but the and more well doe snot claify it so need to chase it up but think he was refering to the fact that his symptons are beyond Eds so thinks something is adding to it .What is the question that no one can answer .

But am pleased to have in writing so can say up yours to those who said do not be so stupid he does not have .

Sparkle I can well imagine thats how you are feeling ,like you am just sick of the battles and having to push demand help for ds.

I got a copy of a letter from rheum to my gp this morning, stating no imaging evidence of anything other than pseudo subluxation (not admitting having lost other xrays), although acknowledging sometimes symptoms had resolved before they xrayed and had only been xrayed in neutral, and implying I am neurotic mother!! Hah!!!! Ortho surgeon on Monday did xrays in flexion and extension and ds subluxed there and then on the xray with zero pain, they told me he has very unstable spine, will sublux and probably dislocate in mri scan. I haven't gone mad, I know this is not good news by the way, but this is really happening to ds and now rheum can't ignore this or make excuses any longer! He can shove his "he hasn't been able to reassure mum" where the sun don't shine, and he can take the nonexistant pseudo subluxations with him.

Now I am going to take my little man to see the clinical psych, cos being in pain, frightened of hurting himself further, urinary incontinence, bowel incontinence, falling over, unability to write anymore, deteriortaing gross motor skills, weight loss and exhaustion, they are clearly all i either his mind or mine! Oh am so cross, and yet feel victoriolic (sp?) in finally getting somemore evidence to replace that which the rheum has either lost or chosen to ignore.

THC I am glad you are back, I have been worried.

sorry have been so so busy and tired, all dc have been unwell again, viruses, infections just the usual.

hope everybody is ok will have a read and catch up later if i get some time!

Hi Ariane.....post how you are doing when you have the time!

I'm still here. (((hugs))) to those who need them. Been manic as usual, physios, paeds etc. Sparkle, DS2 had a normal mri under GA when he was 1, not sure what the flex bit means though.

hello, sorry i have been so busy lately and have not had a good time but ive found a few minutes to get on yhe computer and catch up!

hope everybody is ok today and enjoying the nice weather and half term, i have 2 days with no hospital appts so am very happy not to be in taxis/on the bus with 3 tired and fed up dcs!

we have had a horrible time the past month, dd2 was really unwell, constant screaming, painful legs crying all the time and hitting her head (headache? still not sure) it got to the point where i was at the gp every day with her. We got sent to hospital and the only thing they could find wrong was a low white blood cell count (neutrophils i think were the type of wbc) they repeated the tests a couple opf times over that week and it finally went back to a normal level and she seemed better only to then come out in a rash just on tummy and chest (looks like a cross between c pox and eczema) she still isnt 100 % but i dont really know what to do apart from monitor things its all a bit worrying.

dd1 and ds are both exhausted and have had horrible colds.ds now has extra physio and hydro at hospital every week as hes constantly exhausted and floppy or fidgety and tearful.

I have been sent appointments for physio for my neck and back which keep going if i sleep awkwardly of lift ds (which i have to a lot if he has a bad day) and i end up hardly being able to move and also appt for my hands and arms a si had a scan and tests done which have shown up a lot of inflammation in my finger joints so now i know why i suddenly couldnt even undo bottle or jar lids.the only problem is the appts are at diff hosps on diff days and iam so exhausted from all the other appts i have that im wondering is it worth it, i get so stressed getting to and from physio/hydro/speech therapy/school/preschool/counselling etc etc that i dont know if i have the time and energy for any more appts and obviously the dcs come first so im thinking to save time and make things less hectic that i should not bother with my appts and just muddle along with painkillers.

im really at my wits end with things im so busy and so exhausted. iam meant to start driving lessons on sunday and am so nervous (i have serious confidence and anxiety issues) iam panicking about it already even though itll help in the long term.I feel like im heading for a breakdown i just want a rest
im relying so heavily on my mum,sister and my ex who all have their own problems and i just dont know how to manage everything.

so sorry for the long post and rambling on needed to get everything out

No apologies needed ariane. I am so glad to hear from you. You sounjd like you are hacing a dreadful time at the moment.

First off, I would say stop worrying about needing help from your mum and sister. They love you, and will want to help. Your ex, can have many problems, I know he suffers with pain too, but they are his dc too and he as just as much responsibility to support them, and you. Big hugs.

I am so sorry to hear that you have all been so ill again, seems like you guys are never getting a break at the moment. I know it is a real challenge to juggle all the appointments and get around, the driving will help a lot!!!!! You shouldn't neglect yourself though, and I know I am guilty of this too, but it is you being able to keep going that is also important to your dc.

I too feel so low on self confidence, so I can completely understand you feeling scared about taking the driving challenge, but it is ging to make such a huge difference to your life, and you can do it!!!!

I shall send you good positive vibes for tomorrow.

tap, tap, tippy tap, slide and shuffle.....yep that is me tap dancing for joy!!!!!!

Heard that ds has a place at the DDA compliant ms school, starting on 27th June 2011. Full time one to one support Level 5 TA with all first aid training needed, guaranteed for next three years! Will have a little cry of relief when I have got the children into bed tonight.

Am going to stop dancing now....as am rubbish at it my knees hurt

as rubbish at getting text to cross out too!

see

oh it worked that time

What happened Ariane? How are you THC? Hope you are all recovering from half term. I have dd1 back tomorrow!

Hi all, just joined this thread as I'm taking DD (6 months old) to the GP on Friday to discuss possible hypermobility. I have HMS (and FIbro) and her Dad is also hypermobile so we knew it was almost inevitable but we're concerned at how much looser her joints feel compared to other babies. It feels like we could easily sublux her shoulders just picking her up, whereas all my friends babies feel "solid".

I've seen a mention of flex MRI and GOSH above...is someone trying to get a flex MRI in the UK, and if so, what for (I couldn't see the first mention in the thread). I do Fibro awareness/education work and know members of our advicory board have been trying to find somewhere in the UK that would do flex MRIs, so would be interested in any info on this people have.

It is my ds who is having a flex MRI week after next, at our local hospital in North Staffs, overseen by Ortho Surgeon. My ds has his most significant hypermobility in his ankles, hips, shoulders and cervical vertebrae. He has been repeatedly hopsiatlised with cervical dislocations and subluxations. They are going to perform the flex mri to try to better establish how his vertebrae are moving, and at how much risk his spinal cord is from suffering permanent damage or severing.

A few children on here are seen at GOSH, I have been pushing for it, ds has been referred to Birmingham Royal Ortho Hospital but politic mean that his referral has been buried by birm, hemce we are pushing ahead with local hospital

Oh wow, I didn't know anywhere in the Uk could do flex MRIs. Positional cervical cord compression has been implicated as a possible cause in Fibromyalgia Syndrome (which may explain why hypermobility is such a risk factor for Fibro).

We're off to the GPs in an hour. I'm so nervous. I'm used to fighting my corner medically, but the thought of having to do it for DD and so her health resting on me is scary. Especially as I'm not sure whether we're jumping the gun because of our experiences, as she currently isn't displaying any problems.

One thing I did want to ask all of you though was whether the hypermobility could be a factor in DD not being interested in sitting up? She can sit upright with a little support, but staying stable and upright seems to be an effort for her. She refuses to stay propped up anywhere though and always wriggles off (seemingly using her hypermobility to do so!) so I had just thought the lack of progress at sitting was due to her not practising, whereas most of my friends babies will stay propped somewhere for a while.

I think it could be related, my ds finds it hard to sit still even now and he is 8. For him it is a constant need to readjust, whether it is because of pain, or just due to his poor proprioception not even the "experts" can decide. It could be the same for your dd, she doesn't have to be in pain, just has a need to move partly to establish where she is in the space around her.

I hope the GP's appt went ok, it is a hard thing to do fighting battels for our dc. Everyone on here can empathise with how you feel. I am sure they will be along soon.

so pleased you got the school place sparkle its brilliant news!

i had my driving lesson, it was awful or maybe i was just awful! im so nervous and lack confidence and have a serious issue with spatial awareness so i found it terribly difficult. I must have been terribly tense as that evening and the next day i kept getting muscle spasms in my back and cramp in my hands (i was gripping steering wheel so hard my hands were white)

japhriel-all my 3 were late sitting and floppy compared to babies the same age and all felt very loose jointed like you have described with your dds shoulders, i used to struggle changing nappies as when i lifted their legs by their ankles to do the nappy it felt as though their ankles would dislocate and the joints would crack.

Ooo ariane I had forgot the loose ankles thing!!!!!

Try not to stress about the driving, it is not surprising that you feel anxious. The teacher will help you through it all, I was terrified when I learnt to drive.

How are you and the dc doing this week?