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.

poor thing-dislocated fingers are not nice at all my ds dislocates his but more often his thumbs and screams for hours then has a swollen hand for few days.

well done for the swimming award iam really pleased for you and your ds i know how much things like that mean.it is lovely to see them happy and proud of themselves isnt it, it makes a lovely change to see them happy

I have woken up today with bad back and hip pain iam wondering if i slept awkwardly or just did too much yesterday (had to do a lot of walking and went shopping to get food which usually i get delivered)its really painful and am feeling bit down. doesnt help that ex was meant to have 2 little ones today for 3 hours but cant as he keeps dislocating knee and couldnt get it to go back in.usually thats my time with dd1 to sit down have cup of tea, help with homework or just spend bit of time with her and then the following day he takes her out as he cant take all 3 on his own because of double buggy and dd1 needs bit of help as cant walk too far and falls a fair amount so we split the visits.

i can see that today is going to be one of those days ds is already screaming and crying and really grumpy.

iam going to see if i can tackle the housework today ive left it and left it as felt rubbish all week but its just mounting up so i think its nurofen for me and just grit my teeth and bear the pain and get on with it.really i just want to go to bed and sleep iam utterly exhausted and in pain

Sadly not sparkle I had to call ambulance seems I have been walking hobbling on a fractured hip which got worse last night by standing up and disloating it now in hospital on Morphine

Sorry Ariane always the way when you need the break most and outch on the fingers mini sparkle

rtb4 you poor thing i hope you start to feel better with the pain relief it must be agony.all the best am thinking of you.

rtb4 - How are you doing? I hope it is back in now at least! I dread to think what the recovery time is going to be. Sending all my best heal quickly thoughts.

Ariane - How are you doing? I hope the nurofen has helped. Don't worry about the house, it isn't going anywhere, and you are more important. If it is any help we are living in a dirty untidy house at the moment. I had hoped to be all clean and tidy by the time dh came back fom Germany....not going to happen though. Have spent day amusing ds and dd1 with masses of different arty things, while dd2 cries as is feeling poorly again. DD1 wanted me to strap up her fingers so she could be like ds.... they have been like inseparable twins today.

RTB4 - Get well soon, and ouch

It doesn't seem to be a good week for pain levels. Have any of you tried a TENS machine for your day to day pain (not your dc's)? I find it helps me with my arthritic/neuropathic pain if I use it along with my painkillers, but it is more of a distraction.

we didnt have the best weekend but you are right sparkle it doesnt matter if the house is a mess i just panic about it as during the week i have to be up so early and try to have everything organised and i find it so hard.the weekends are my catch up days for the washing etc but i felt rough and ex couldnt have kids so i got all workd up about it .silly of me really but things seem to really bother me these days and i get down so easily.

deepbreath-i havnt tried TENS but i might give it a go, i have physio appt today so might ask then if i should try it as i have been feeling so achy and sore.

rtb4- hope you are feeling better and that you arnt in as much pain.

hope you all have the best day you can iam off now to do the morning physio with dd1 and ds.take care everybody

Welldone sparkles ds on the swimming award and least the headteacher does seem to be trying with including ds so much better when there willing to learn

Deepbreath may bare in mind the tens though I'm fortunate anddont suffer anything like you ladies do or our dc do

Ariane

Honestly if you could see my house some days but always say it's a home not a show house

Have had to cancel ds local orthopeadics now won't be seen to 20th October .Though lol having to cancel it and explain why was funny as I'm under orthopeadics now to and guess what the orthopeadic guy was like wow I'm dsuprised you dislocated it as normally shoulders knees bit he seems know very little about EDS

but fingers crosses couple days be home hip is back and fracture pinned but though that this is what ds lives with is horrendous

hope all ok today and all dcs well or at least having a low pain day. i have had rubbish night in pain with my arm, it had improved but had physio on mon, ultrasound and the physio kept really pressing on my arm after, something to do with ulna nerve i think?? it was agony.it has hurt all night even up the back of my arm too.

apart from that iam generally exhausted and tearful i really feel like am on brink of a breakdown iam so tired and i just want to sleep. iam hardly coping with 3 kids,myself,and running the house its all got too much.ds going to gosh next week for ga and mri scan and am worrying myself silly about a reaction to the ga and the results of mri.

i am so run down the combination of late nights,disturbed sleep,early mornings and so many hosp appts has left me a wreck, iam the most exhausted ive ever been,in pain and have broken out in eczema and acne which i assume is due to stress.really fed up.sorry iam ranting (again)

Ariane please rant away. Have you spoken to gosh about your concerns over allergic reactions to the ga yet? If not speaking to the consultant mri supervisor and/or the anaesthetist may help to calm you down. I did this during the summer hols, and although the mri was cancelled at the last minute I felt much better for tallking though my concerns with them.

I use a tens machine a lot, when my back is bad, and I have always found it very helpful for me, I have to crank it up very high, but mainly because I can't take any helpful painkillers to take the edge off. I think that used together it would work quite well.

rtb4, you are so unlucky with your ortho's...first Addenbrookes and now your local one too. Surely somewhere there is one who knows what he/she is doing. God I hope so because my ds really needs one.

Fairly good day painwise today for us, ds did subluxate his ankle this morning, but he pushed it back in, and announced cheerfully that it barely hurt now. He went swimming yesterday and had a wonderful time apparently he nearly fell asleep in the coach on way back to school, teacher's had to keep him awake.

Ostive news here on my front have found orthodox who knows little bit about Eds but intrested enough to find ou more so was bit more clues up turns out I have a problem with hipshape that's probably related to eds and explains why hip dislocated as the cups not formed shown up on the MRI would love to get ds one on hips back etc

There hoping as swelling goes down should get feeling back in the nerve

Ariane sorry hear your still suffering

apparently it's common in eds suffers to have nerve damage where the joints compress the nerves when pop out and with the swelling

i spoke to gosh re the ga and they have assured me that even though some of the meds they use are based on egg that ds will have the red allergy bands on etc and that everybody dealing with him will know what he can/cant have which is reassuring in a sense but iam still worried as he has so many allergies i panic that there may be one i dont know about yet and that he will end up being given a medicine he reacts to severely, he gets anaphylactic shock with the food allergies he has and i am terrified that if he has an allergy to the ga that i will lose him.

i think iam just very stressed and iam getting overprotective/neurotic but iam just so terribly worried and then of course i will be panicking over what the results may show as they seemed so concerned that a child of his age has such bad pain.

Had rubbish day again today just rushing about and too much to do.only nice part of the day was helping out at ds pre school nature trail, i had to go along to help him as he dislocates so easily they wanted me to go so that he didnt have to miss out and he had a lovely time but got really tired.i was in such a state when i finally got home my ex came round had to help me bath kids, put them to bed etc, he has only just left now so of course im now feeling sorry for myself and lonely.im tired and should go to bed but my arm is really sore and my mind is racing and even though i know i have to be up at 6am i just cant sleep.

How are you feeling ariane? I hope you managed to sleep last night. Well done for speaking to gosh, of course you are still going to worry, but I am sure it will be ok, remind me when he is going, is it next week?

Where is your ortho specialist rtb4? I wonder if we could see him/her. I have a lot of loss of sensation in my hands and fingers, I wonder if that is nerve damage from all the times I have dislocated my wrists! It is so good you have some positive news, is the ortho seeing you and the dc or just you so far...will he accept them all?

Am feelng really down, let my guard down a bit, about my guilt feelings, with a lovely friend, felt really stupid as soon as the words tumbled out, bless her she was so nice but I think she thinks I am mad/illogical!

He is in Harlow, so far just me as obviously came In with acute injury but as his whole team seem intrested in Eds am hoping least ds3 will go under him

ds going in next wed to gosh for the mri i am sure itll be ok but its more the allergy thing worrying me as he is so so sensitive to so many things, day to day it is very hard dealing with it and making sure he doesnt have a reaction so am just bithered about the ga.

sorry for going on so much i am just such a worrier !

Did u all know bowel condtions are. Often linked to eds and can cause dilated bowels

My ds is the only one of my dc who has food intolerances....I always blamed the health visitors for insisting he needed food early as he developed intolerances/allergies to all first foods..rice (including rice milk and baby rice), carrots, any dark green leaf vegetables, as a result we have to leave out other foods that can produce allergic responses..nuts, strawberries etc. I am beginning to wonder if this is just another symptom of eds. Do you know the symptoms of dilated bowels?

all of my 3 have allergies but ds by far the worst, have not heard of dilated bowels but mine all have problems with constipation, tummy aches etc, dd1 used to have to have lactulose a lot when she was younger.i suffer mildly with similar problems but nothing that bothers me terribly just few pains once or twice a week, i had heard of eds causing bowel trouble but it hasnt ever really been mentioned at any of our appointments.

sparkle-i agree about the hv comment they do seem eager to get babies weaned, when dd1 and ds were born (c sections) the midwife took them both off and gave them a bottle even though i wanted to bf but as i was only just back from theatre they said for them to have formula instead, it made ds so so ill he suddenly got very mucousy and they said it was because he was a c sect baby and kept insisting on giving him more formula to make him vomit up the mucous but it just got worse and worse ob because he couldnt tolerate the formula! i was so angry with them.he always had terrible reflux as well and developed a nasty skin condition caused by the allergy affecting his white blood cells in some kind of allergic/immune response, it was awful.

not having a good day again today unfortunately, dd1 up at 5 am not feeling well, has a cold and her legs hurt then ds and dd2 got up at 6am.iam having trouble today really sore knees and hips and pins and needles in my back and my wrist is really painful, i have got something wrong with a tendon under my toe as well so every time i put my foot down it is hurting and feels like it will snap, not sure what it is but is not nice and is making getting around a real pain.

i think today will have to be another day stuck in at home trying to keep kids occupied prob baking or painting! no ex again today as he has to work so kids a bit disappointed

I am so sorry you have started with a bad day today. I hope the pain eases as the day goes on. I am knackered, another bad night for the kids, and a bit depressed, but the sun is supposed to shine today, so I am hoping that will lift my mood.

It does seem to be nice weather today you are right maybe it will help,i think my problem is mainly tiredness everything hurts more when i am tired.

hope you feel a bit better too

Ok constipation or the runs can often be linked to Eds Constipation being caused by the fact that the bowel is stretchy so streches allowing large amount of food to sit in it then as overstretched it's not to elastic so then struggles to move it along .occasionaly it's over effective and moves to fast

The dilated bowel is because the eds affects the tissues and course the bowel is one .

is often seen on xrays which can cause confusion as can be sign of obstruction in a nt person .Know this as they had panic as had xray cue surgeons and a ct scan they thought was obstruction luckily ct scan confirmed was ok it was just spton of eds but a worrying moment

think ai have just fallen very lucky and the reg knows bit about eds and consultant intrested enough to want to learn more

Sun is shining yeah.....new bank cards haven't arrived so neither dh or I can get out any money booo.....ds gone to school with only pain in one foot yeah.....still had pain in one foot boooo....house is filthy boooo...have time to clean it today....double boo!

Seriously, how long do you think I should give the Rheumatologist to find a new otho surgeon for ds, it has been two weeks and I have heard nothing except new appointment to see Rheumatologist in January. On the other hand if there is an emergency I do have a plan of action from them, and contact numbers....so am I worrying unnecessarily? So hard to see the wood for the trees sometimes isn't it.

Oh know on the bank cards hate it when that happens

hmm knowing the nhs I would give fewore weeks then check he has done referal and to who then chase it up at the who end bit hood that you have plan of action

have had to cancel one of ds appontments last week with orthos due to me being in hospital now got to wait till middle of October

For me it's very lazy day got home Saturday haveanged to get kids fed dressed of to school them crawled back into my bed am trying for round two of getting up .ds has appointments somewhere tomorrow and depending where is might need to cancel no way can trek up to Cambridge

How is your pain level now? (turning into a lazy day for me too, still long list of jobs and I haven't done any yet, except chase the bank cards!!)

Better now I'm home in hospital you start asking for painkillers 3 hrs later you get them had week of that but since been home been able cut them right down but feel crap mum as not able be my normal self with them but also breaking my heart to reliaze ds lives with pain like this

am on crutches for next month at least am venturing out later collect dd from school thankfully only 5 mi it's away ds1 took her in before collage but not home in time to pick her up