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.

Happy Birthday Sparkle

Got to go and get ds from school now (dd is here with me as her heart and chest are doing odd things). I will try to get back on later though - have a fab day!

Gosh I hope she is all right.

happy birthday sparkle

Happy birthday Sparkle. Hope you had a great day

hope you had a lovely birthday yesterday sparkle and well done with the list of things to get sorted out, i find it helps to write stuff down and sort out a 'plan of action' and i really hope you manage to get everything in place to make things easier for you and ds, its worth the fight if it helps (esp the school place issue).

I cant believe you were refused dla, i get it for dd1 and ds, ds has a lot of needs and problems, frequent dislocations, uses a buggy for all trips out as gets so much pain in legs/back/neck that he screams, is in pain every day and wakes 4-5 times a night in pain, cannot manage to go up and down stairs (i have to carry up and he 'bumps' on bottom to come down with me just in front of him), daily physio, weekly hydro and speech therapy. allergy and digestive problems, he is on medication for severe migraines which when he gets them wipe him out for a couple of days. he also is still in nappies at night and training pants in day and for some reason the worse his back pain the less bladder control he has.

he gets higher rate for both.dd1 gets higher mobility and middle care. ive tried to list all the probs so you can 'compare' to your ds as from what youve said it sounds very similar to my ds and i cant for the life of me see why they refused your claim ?

How is everyone doing?

Sparkle, hope you enjoyed the rest of your birthday.

Ariane, I read your last post and thought of this

I don't know if I've mentioned Dural Ectasia before, but a lot of people with Marfans/EDS have it - it causes migraine like headaches and can irritate the spinal nerves (causing continence problems).

I took dd to the doctor's, and we ended up in A&E. We spent last night on the children's ward. Her chest was very sore and her heart was mucking about a bit. They weren't happy with her ECG at first, something was wrong with the T wave section of it. They were checking her out for aortic dissection too, so it was a bit stressful. After monitoring her closely, they decided that the pain was more likely to be costochondritis (ouch).

Thankyou deepbreath i will have a look at that as it does sound like ds i will mention it to consultant at our appt on 22nd.hope your dd is feeling better today, it must have been scary for her (and you) so i hope all is well now.

We are having yet another rubbish day, ds is still unwell yet another virus/infection (dont know which yet as havnt seen doctor) he is so run down and so thin, poor little thing has been unwell on and off like this for months now and his diet isnt great at best of times due to his allergies but he is skin and bones now and is covered in eczema too, he is just lying on the sofa looking sorry for himself and asking why he cant go to playgroup to see his friends

Luckily my mum had dd1 for me last night so i dont have to do the school run today as its just too cold to take ds out when hes so unwell and iam totally exhausted.I had one of my 'breakdown' weekends where i just couldnt get anything done and spent 90% of the time in tears either from tiredness or because my arms hurt so much.My mum and sister do a lot to help and ex p tries his best too but its just all got a bit much. I am going to try and get myself back on track today with the help of lots of cups of tea a nd chocolate biscuits! its either that or give up

Ariane - I am so close to the giving up, I really am.

Have put in for a reconsideration for dla, but don't hold out much hope, think they are moving the goal posts as we post, to reduce who the payout to. Ds was so distressed this morning he told me he wanted to die. Took him to school and found his supposed main carer in school, she has been critised for supporting him by her line manager, so had to ask permission to help him, eventually they had to gently manhandle him to get him into class, because he wouldn't let me go. Then as I get home I have a call from the Physical Disabilities Outreach worker to tell me that the Head of the disabled access school who told me two weeks ago he would be happy to have ds has now changed his mind, and is playing the full card. Have nowhere to go, have no decent medical care, have no-one taking responsibility, have no options, no support, no money, no job - can't get one because have to be there for ds, dh is on antidep, he facing another reorganisation at work and more redundancies, why not give up everyone else has.

oh Sparkle that's awful. No advice as DS2 is younger. I'm wondering whether to apply for mobility now that DS2 is nearly 3 but I'm worried we'll lose his middle rate care and not get any mobility. I hope your day has improved.

That is a hard one ellie, you don't want to lose what you already have.....perhaps you should start a specific thread about that, others are quite experienced with reapplications....while my experience is less than successful, that may not mean anything in your situation, as they already acknowledged the care portion.

Nope day has not really improved. PD outreach worker can't get an answer yet from any other Heads that they would be willing to accept ds, and ds has come home and told me he is being singled out by dinner staff to have to sit away from all his friends and class.....thhat place is dreadful.

Sparkle, I am so sorry to read this. I didn't want to read and not reply but dd is just waking up and is due for more pain relief.

Don't give up. I hope that tomorrow will be better for you.

sparkle, im so sorry you are feeling so bad, i wish i could say something to help but i have no answers all i can say is that hand on heart i really understand exactly what you are going through and the very best i can offer is frienship and a sympathetic ear whenever you need me.

Wish you lived nearer me then maybe i could help more.

Ariane deepbreath and ellie - knowing you are listening and understand means so much to me, especially when you all have so much to deal with too. Thank you.

ellie it wa stricky for me to , but ds got Hrm at 3 then we just had it renewed at 5 ffor another 3 years ,

He can walk but not far and wears afos

Sparkel thats really bad but saying that am not suprised school ahve no support from the Pd team at all for ds3 and am trying not to think ahead to what will happend end of this school year am putting of to Easter time head burying in sand anyone and then decide where im looking for ds3 to go at end of year 2 as it all depends very much on his speech or more so lack of speech .All i know for him Ms will be a diaster.

Sparkle will gosh not back a movif he does you e to a differnt school and not sure does ds have a statement becuase if he does you can look at using that as way of disprooving all other schools are not suitable for ds and that only this one is and would mean that even if full you can force the palce they can go one over

Araine you must be worn out can only imagine how hard it is to cope and be unwell yourself no wonder your feeling low

deepbreath hope dd is feeling better soon and she and you can rest

hope everybody is ok today.

sparkle hope you are feeling a bit better and that ds is ok.

deepbreath hope dd is on the mend and that her chest isnt painful anymore

We are all at home today dd was sent home yesterday unwell (temp etc) but also with terrible hand pain (back of hand i think its the tendons) she had been trying to learn the guitar but i think the practising has made her hand painful which is a shame, she was up till nearly midnight in agony.

I tried everything, cold compress, nurofen ans the only thing that relieves it slightly is having it bandaged quite firmly and keeping it still.Its her right hand as well so hopefully itll get better quickly as she is right handed .She isnt herself at all today and looks really unwell almost how she goes before she faints sometimes so am keeping a very close eye on her

Hi Everyone

Deepbreath how is your dd doing? I do hope she is better.

Ariane That is so frustrating for your dd, trying to do something so positive as leanr the guitar and getting pain from it. My ds often finds bandages a great support, interesting isn't it, guess it just artificially tightens everything up and does the job that the soft tissue doesn't do naturally.

I have been ill again, with tonsilitis, had to keep the children at homw with me yesterday, even had to get the GP to come out to me, which he did, andbought antibios with him. Much improved today. Ds has had a bad couple of weeks now, and it turns out he has been lashing out at his friends, shouting at them, saying very hurtful things, he is in such a bad place emotionally, but I have sat him down today and laid down the law - no excuse, never ok, will never happen again, if he breaks these rules there will be serious consquences. I will not have him upsetting of hurtng other children, even if I understand why he is lashing out and how upset and frustrated he is!

hi everyone

Ariane and deepbreath hows your dd `s doing

Saprkle you heard anymore from Dla and are you taking it easy after the surgery and ug on the tosilitus

Can imagne its not easy for ds am hoping they get him some help at least for ds3 its easier as he does not notice the difernace as such blessing in its own way

as for me im struggling to find school for ds3 for juniors becuase of statements it has to be decided May this year for september 2012

Have got thread going but the pd said ds is suitable so many ways but the fact he does not have dx that fits with their ofical titles means Lea will be hard to win.They have invited me to come look at the school and chat they seem lovely its going to be the lea

ms dont want him mld dont want him and Lea saying more speech unit not right

hello , we spent all of yest afternoon at hospital as dd hand was terribly painful, they saw her and said its either a sprain or the tendons. theres nothing on it to see no redness/swelling etc so they didnt x ray and are just putting it down to the eds and too much guitar practice.

She has a tubi grip support which seems to help a bit.

Managed to sublux ds shoulder again lifting him out of buggy, my hands slipped lifting him round his waist and his shoulder nearly popped out, it was quite horrible and he was screaming that id hurt his elbow (poor thing gets elbow/shoulder muddled up. he has been ever so fidgety lately and when i told him to stand still he got upset and said 'i cant mummy the eds in my legs is making me do it' i had no idea he even knew what his condition was called and just shows hopw much he has picked up from hosp appts.

hope everybody is ok and having a good day.

smart child shows they listern more than we credit them for hope dd feels better soon

my dd alos pops and clonks a good un when she moves arms or you lift her but as not causing issue am leaving it for now

Ok question for those that get seen at Gosh do any if you see a Dr evander?.As it is looking like we may get the holy Grail .Genetics have wrote to him to ask if he would consider seeing ds ?

Mind not holding my breath as no one seems paticulary keen on taking him on as he can't be pigeon holed into a nice little box or fit a nice little label

But I do think with a definte Eds dx that he would get more help rather than brushed of with oh well were see hypermoblity should not cause that

mind I'm so tempted to say well ffs how many kids withhypermoblity actually need to wear splints that go right up to top of his calfs without then his walking is going downhill and were seeing more strain on his knees and ankles .I really do belive he has EDS

Thoughphysio did actually say the other daythat ds is likely to only get to a point and reckons were likely there and that as a teen he's lilley detoriate a while

I am still trying to get there, and at this point I feel like giving up!

Where you trying to get to clinic ?

Suggestion do any of you ladies have yahoo or mam messanger it may be easier way for us to all chat .Can set up under fake name under our mumsnet names if people feel happier with that,

just means we can let of steam more

Yep, I would be very happy with that, if you can tell me how to do it at my end, cos am feeling bit stupid.

Am asked for referral to EDS/hypermobility clinic at GOSH. Basically want to see the prof with ds, but also want to actually GET TO SEE AN ORTHO SURGEON!!!!!!!!! I will have become a qualified ortho surgeon myself (albeit only specialising in my ds's specific 2 vertebrae ) by the time we actually get to see one. The Rheumatologists have just less than two weeks before my deadline for a response from their chosen ortho surgeon.....times a ticking and then then I will explode.