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.

lol ok [http://uk.messenger.yahoo.com/]] there linky you need download and then it takes you through registering

and yes we got so close and gosh keep turning us down as ds is to complex im like yes i know he is complex so how on earth you expect local paed deal with him and how on earth you expect me as his mother to fight research and argue with proffesionals to get support

uk.messenger.yahoo.com/

try that link

Right that is all set up, shall I tell you my user name so you can find me?

ok or ill pm you mine if you like

Not sure how the pm works either, am it luddite today!

its ok top of the page next tothe log out words is your inbox click on it and will open up and to pm anyone else if look across from your name where says message poster

I spend far to much time using computers researching for ds 3 or ds2 and my best friend lives in the states and me and him talk all the time and mean all his time zone and mine

I can do all the internet searching, I too spend too much time doing that but am useless at any of the messaging stuff. Hope to find you soon.

Found you

hi Ariane,

How are you doing? Have had a lovely chance to have a proper chat with grtb4 today, it would be lovely if you could join us, and any others.

Hope you are ok.

yes that would be good, do i just go on that link above and set it up? sorry iam really bad with computers! i will try

we had an ok day quite uneventful and 'normal' dare i say it (well normal for us anyway)!

Hi Ariane yes you do and when your done will inbox you my username and it search and you can add me

and yes me and sparkle put worlds to right today was fun

Didn't get ds to sleep before midnight last night, some of it was about pain, the rest was about I don't know what - he just got himself in a really tizzy. DH was in tears by the end too, all a bit much.

Have tried to ring ds's rheumatologist this morning, but no-body is answering the telephone!

hello...

i just wanted to pop my head around the door,i was so surprised to find this thread that ive put off posting on it for a while!

im hypermobile,although ive never had treatment,just pain meds,as ive been on waiting lists,and moved about a bit,this thread has given me a bit of a kick up the arse to go start the battle again,i am a bit out of the loop though,it all seems to have moved on alot since i was diagnosed!

i have a DD 2,6 (who im pretty sure is hypermobile,but does not seem tl have any/much pain)
and DS 4mo (to young to tell!)

so urhh hello,and any advice mote gratefully received!

Hi Frigg. Have you got a rheumatologist, or is that who you have been waiting to see? First steps for you, it would seem to me, is to get a Rheumatologist and get some support interms of physio, OT adaptations, and you might be able to better control your own pain, reduce reliance on pain meds, and avoiding becoming allergic to NSAIDs like me, cos tis a right bugger (excuse potty mouth, but it is )

In terms of your dc. You need to see the gp and get a referral to a rheumatologist who specialises, or has an interest in paediatrics. This is a better option than just going to the community paediatrician at the hospital, they don't know enough about hypermobility, and you might suffer from getting fobbed off with inaction like some posters have to battle with on here(am I right here guys?). I am lucky that my gp has actually been very supportive, and in fact even the previous gp referred my ds straight to Prof Grahame, on basis of my concerns and Prof Grahame having dx me in my early 20's. Since then I have spent abut 1 1/2 years trying to get back to see Prof Grahame, as ds' condition went from completely manageable to life threatening in sept 2009. We currently have a dx, but due to ds' complications we have no specialist, and so battle this every day/week with the Rheumatologists. I would steel yourself for a fight, EDS and hypermobility is so badly understood, I would go so far as to say the mums knowledge on this site beats any of the actually medical input I have had yet, either for me or my ds.

thanks for that post sparkle ive been on and off meds for a while,ive been pregnant and BFing,so only able to take them when i absolutely need them,i have been suffering with alot of pain though and i need to do something now.
not sure what NSAIDs are?!

i dont have a rheumatologist at all,when i was diagnosed i took in info about HMS from my sister (also suffers) as id been to my gp over and over with no results,when i gave them to him he just said...oh,yes,that seems about right,and refered me to someone who seemed to know what he was talking about! sorry for my ignorence,but i was about 18 at the time and far more intrested in my upcoming jaunt to Australia...

so now im suffering for it!
he gave me pain meds and said something about a list ...ive been back to various gp's since to no great avail...
but this time,im determined.

ive found it generally best to ignore ignore ignore,no one seems to 'know' of the condition or understand it at all,ive even been sacked a few times because of the things i can and cannot do...and i swear my DP still doesnt really get it, and feels some resentment about it all,even though,in practical terms he is very helpful...anyhooo,TMI i expect

and im sorry,you say your sons condition is life threatining? how is he now? does he have EDS? or marfans? my niece was recently diagnosed with this shes 19!

(i'll go and read the thread properly now!)

thankyou!

Hello!

Haven't posted for a bit as I had a busy week with dd. Had a meeting at school yesterday to come up with a care plan. School has already put some of it into action and dd seems much happier already, despite the 2 accidents she had in school today. She twisted her ankle and got a big bruise on her hip.

Just trying to catch up with you all - I agree with Sparkle that most paediatricians probably aren't up to speed enough with connective tissue disorders, but have heard good things about rheumatologists!

Hi deepbreath I hope dd is not too sore tomorrow, great news about the care plan. What kinds of things have they considered when drawing that up. I ask given I wrote ds care plan myself, and was just adoped by the school, have no idea if I have done it right.

Figgyroll, never tmi on here, promise. Never too many rants, moans, pleas for help either, some days I wouldn't et by without knowing I can come and dump it all on here and find understanding friends.

NSAIDs is the overall name given to all Non-Steriodal Anti-inflam drugs, like asprin, nurophen, other ibuprofens, mefanamic acid (?sp?) etc. They all work by providing both analgesic (in other words pain) relief and have an anti inflam in them to reduce inflamation. They are the first port of call for most joint problmes that require pain relief.

If you list your symptoms now and in the past, pains, aches, dislocations, what you can manage, what you can't, facts around having been sacked, fact GP has dx hypermobility and been referred in the past (twas probably a Rheumatologist you saw then), but now need more support and monitoring, and take that to GP.

My ds has EDS (Ehlers Danlos Syndrome) hypermobile type, which effctively is proabably just a lsightly more extreme version of benign joint hypermobility. Unfortunately he experiences sever hypermobility in his neck vertebrae, regularly falls and dislocated the vertebrae, thus damaging the spnal cord, and running the risk of severing the spinal cord. Ho hum

Do you want to talk about you dc, lots of people on here have advice and stories about how hypermobility affects and has affected their dc, give you an idea of what to look out for. Well we are here if you need us. I am on here every day at the moment, trying to out off all the fights I am currently in the middle of for ds

Frigg, that message was meant for you promise figgyroll is a new friend on the breast cancer thread, and I got my names muddled up, not my post.....

thanks again sparkle
that is so sad,about your son.
and a breast cancer thread too...dont you have all the luck

my DD woke up last night crying that her arm hurt,and she trips up alot despite having been walking since 8 mo so has had a lot of practice,she bruise's like a peach,has 'flatish' feet,and is bendy as anything.
ATM im hoping its just the HM without the pain,but we'll see.
is there anything in particular i can look out for?to indicate she may be in pain?!
i remember not wanting to run as a child,figuring it was painful for everyone,and not really getting why everybody else seemed to enjoy it
and lying in bed a night cycling my legs in the air until i fell asleep...

its so helpful to see what i should say to the gp,all the relevent experiances together like that,so thankyou very much,it's really clarified it for me,i feel much more confident in what im saying now!

In hindsight I now see that my ds was in pain, but at the time I didn't really know. I think for a long time he thought it was normal. You could have been writing about me as a child when you described yourself. snap!

My ds was slow to roll over, and boy did he cry about it. I thought he was just doing that baby frustrated thing, but he was my first and I know better now. He walked at 13 months, so not early but not late, although later than his sisters. He complained a lot about what we thought was cramp in his legs when he was about 3, but it was probably joint pain. He fell over everything, and struggled with his gross motor skills right from the word go. Interestingly enough his fine motor skills were always very advanced, but he is falling behind now quite rapidly. When he sat as a toddler his hips clearly would dislocate so the outside of his feet would lie flat on the floor. He felt too flexible, he would subluxate his shoulders when I went to pick him up under the arms and he wanted to carry on playing. He was late to potty train during the day, but not as late as some, about 3 3/4. He was not dry at night until nearly 6, younger sister managed it way before him and she is 2 1/2 years younger. He has food intolerances which given him terrible tummy aches, and wind. All of these symptoms and more are repeated by different posters on here. Not every child seems to be affected in the same way, it seems very variable. Soft velvety skins seems to be a pretty common thread though. Grtb4 what have I missed, you have more dc with this....?

EDS and hypermobility are still dx by clinical dx, in other words manipulating the joints. There are two scales used the Beighton and the Brighton, but current advice is that these are just a guide, and not definitive, they focus on the hypermobility of some joints, but miss others. I can give you a link to some useful websites if you like, rather than trawling back though all our messages to find them. oes that help at all, or am I rambling. Am sleep deprived at moment, so happy to admit to rambling!

Don't worry re breast cancer, I had some masses removed a couple of weeks ago, and I am doing ok for now, scarring isn't too bad either. Just trying to encourage chocolate biscuits to fill out the missing bits now.....not sure it is working but am enjoying the effort

yes ,very helpful,thankyou.
funnily enough DD has always been advanced in gross motor skill,but behind with her fine motors,she often feels 'too' flexible,like a rag doll,when she's tantruming she'll go compleatly loose so it's almost impossible to hold on to her...i'd never even thought about it until now,odd,the things you miss when you arent looking...

she is also 2.6 and no where near ready to potty train,i had no idea it could be linked,so thats very reasuring.
she screams and hits when we change her nappy too,but i think thats more to do with being 2 than anything else

loving the idea of biscuits filling out the 'missing bits'.nice

(apologies,for the awful spelling!)

Never apologise to me for spelling, I am the world's worst, and add typos into that and it is amazing that any of you can ever read anything I write

Screaming during nappy changes could well be just being 2, but could also be discomfort in her hips. I would just watch it. It is so difficult to sort through everything especially when they can tantrum so amazing at nothing at all Ds was quite dire with his toilet training, but he got there, so my advice would be to not worry about it for a while yet, and keep relaxed about it. I used t tell dh I was sure I could get ds dry by the time he was a teenager, so chill. It is still within the "normal" bracket for a dc to not be dry in day, never mind at night, for a long time yet.

On here, I have learnt so much about how many common threads all our dc have, and yet how completely differently this condition affects them. Gross motor skills, fine motor skills, muscle tone, coordination, if you stand back from it it is actually quite interesting.

On other hand my ds has gone off in major upset today, feeling miserable about his lfe. So that just drags you back to the reality.

oh,your poor DS,how old is he now?
my sister went to a meet up i think a few years ago,lots of people with HMS,maybe that could help?

id never really thought it could be her hip's,it could well be though,as it's sometimes a problem,sometimes not,but she seems to want to put it off as long as possible,and really cry's.oh crap,poor kid...

thankyou,this thread is really useful and definitely helping.