henriette Posted March 22, 2010 Share Posted March 22, 2010 Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 24, 2010 Author Share Posted March 24, 2010 I've just had another "Guess where Lauren is" phone call Her other shoulder this time - the radiographer insisted - again - that it wasn't out........this time the doctor agreed with Lauren. He asked for another check on the one she dislocated on Saturday and he decided that Lauren was right about that one as well. She can't move either arm properly. They are trying to put both shoulders back, she's having gas and air first. They have put her shoulders back using just the gas and air before when they've been worse than most adults who need to have a general.........they're becoming more difficult to put back. She also used to be able to put them back herself but can't anymore. We sat and read a thread on the EDS forum yesterday, entitled "Dislocations doing the stupidest things?" - it gave us all a good (if rather hollow) laugh. She knows she's not the only one. (I did have to read them out to her and skip a few which were a little adult - it's amazing what happens to some peoples hips at the most inopportune moments ) This one she did last night - she was allowed to go to her friend's to play, for an hour. Her Mum crossed her over the main road and her Dad was to pick her up an hour later. Just before she went home she stumbled and put her hand out to steady herself She thought it would be OK and didn't mention it until bedtime when she couldn't get undressed. They decided to dose her up with painkillers and prop all her pillows up and wait to see how it was in the morning as she would have been hours at A&E again and they never have a paediatricain or orthopaedic consultant around at night anyway. Just waiting to hear how they're getting on........it's been some time now Quote Link to comment Share on other sites More sharing options...
ClaireG Posted March 24, 2010 Share Posted March 24, 2010 Oh no Lesley not again Everythinbg here crossed that they can put both shoulders back in palce without too much pain for poor Lauren. Quote Link to comment Share on other sites More sharing options...
Seagazer Posted March 24, 2010 Share Posted March 24, 2010 Oh goodness, not again. I hope Lauren will be okay. Quote Link to comment Share on other sites More sharing options...
chickencam Posted March 24, 2010 Share Posted March 24, 2010 Fingers crossed Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 24, 2010 Author Share Posted March 24, 2010 Gas and air and morphine have not worked - they won't go back in. They want to admit her but she's not having it and says "they are back in now - I'll go home" We're hoping that they will insist - they keep deferring to a 12 year old....... - tricky situation. I need to take the dogs out but have to wait for the next installment. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted March 24, 2010 Share Posted March 24, 2010 Crumbs Lesley, what a nightmare {{hugs}} to you all Sha x Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted March 24, 2010 Share Posted March 24, 2010 Oh goodness, when will it all end? Poor girl. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 24, 2010 Author Share Posted March 24, 2010 One shoulder is now back in and the other they're not sure about - she's on her way home. The doctor managed to get hold of the consultant she first started with for her shoulders and he came to sort it all out. He has referred her to see a specialist in Oxford as he says something must be done now - she can't carry on like this. Both hospital and school continually treat each individual problem! If the hospital had any sort of computerised medical notes that would see at a glance what is happening here - whoever takes her has to go through the whole list every time.......and then they treat whatever needs looking at The school appeared to be helpful at first but have actually been quite ineffective Lauren's Mum has been reading as much as she can find to see what they were supposed to be doing and they've done very little of it It's been taking 2 days from a phone call for the SENCO to call back, no work is being sent home, teachers aren't keeping in touch.............luckily Lauren is bright enought to have not fallen behind but she's nowhere near where she could be. She was being fast-tracked (whatever that's called) until she started all this at nine and a half. She should have been referred to EIS (?) but hasn't because the school have been very slow at seeing this as an ongoing problem. Her Mum has found a group called Warks. Parent Partnership and they've been very helpful. sorry - just needed to rant........ .....the dogs must have their legs crossed by now.......... Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted March 24, 2010 Share Posted March 24, 2010 Oh, poor Lauren, there just seems to be no end in sight. I can only suggest that you beg her GP to refer her to Great Ormond Street as they have specialists there who will indeed look at the whole problem. At some point she needs to be able to strengthen the muscles in her shoulders so that they act as stabilisers for her joints. But, of course, she can't do any exercise whilst she's in constant danger of dislocation. Talk about a vicious circle. If she got to see a physio who is an expert in EDS/HMS like i did, they'd be able to give her the most gentle exercises which don't even seem like exercise at first. She needs to build some strength very very slowly. I really hpe the school gets it's act together as well, they should have something in place by now and with Easter coming up it'll be another fortnight i suppose They need to be nagged at until they do what they should be doing and if they don't, go to your MP!!! Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted March 24, 2010 Share Posted March 24, 2010 I can't believe what the poor girl has to go through . And all the rest of you as a result too . Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 24, 2010 Author Share Posted March 24, 2010 It is a bit wearing I must admit. Lauren's Dad had just managed to sort out working from home 2 days a week so that he was able to help - just in time. Lauren does now have a very good Physio and she's pushing in other areas as well, to get things sorted. We'll ask her about GOSH and see what she can find out Helen. Thank you. The problem is that until you come up against something like this you don't know what help there may be available - and even the people who do know, like the school, seem reluctant to tell you. I've had far more help from people on here than through any of the channels that should be pointing us in the right direction. I suppose it all costs money. Quote Link to comment Share on other sites More sharing options...
Snowy Posted March 25, 2010 Share Posted March 25, 2010 Oh Lauren (((very very gentle hugs))) I know it's probably not what you want education wise, but it may be worth looking at some of the organisations that support home schooling. If the 'authorities' are unable to supply the appropriate work for her, you may be able to source it yourself and get some other good ideas about how to keep her education up to date. The best one is Education Otherwise Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 25, 2010 Author Share Posted March 25, 2010 Thanks Snowy - it is one option being looked at, and I'll keep that link, but Lauren is very sociable and loves school so the first thing is to see if she can change school. I think I mentioned before in a schools thread that we have three secondary schools, all about 5 miles away. Two of them are no longer available to children from Lauren's village so she's ended up at her current school - which is a sports academy..........and Lauren loves sports.........she did hope she was going to be well enough to do sport One of the others is very new and has lifts and each child has a locker. My daughter and SIL are going to see the head and see what can be done. Quite a lot has happened today - DD has spoken to the parents group and they are coming out to see her. She also spoke to the SENCO and mentioned that the school has done none of the things they are obliged to do and Lauren has had no work sent or emailed............three teachers miraculously sent work this afternoon DD also spoke to the Paeds. Consultant at Nuneaton and discussed the referral to Oxford. She's OK with Lauren being referred but both she and Lauren's Physio are totally against any surgery - she's too young, her joints are multilaterally unstable and people with EDS do not do well with surgery because of the collagen problem - they often don't heal and joints will pop back out even in the recovery period. The Physio is sorting out a fitting for a Lycra T shirt which may help to hold her shoulders in place. The Consultant is also already looking at a referral to the residential physio course they hold at Birmingham's Childrens' Hospital - DD did ask about GOSH but Consultant feels that the one in Birmingham one would be more suited to Lauren. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted March 25, 2010 Share Posted March 25, 2010 Such a shame being uprooted to another school and leave her friends, but her health comes first - she's young and bright enough to make new friends too. But goodness me - I sometimes dread reading the post because every time I do Lauren has another do! Hope I'm not jinxing her from afar! Here's a choccy bunny for her. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 25, 2010 Author Share Posted March 25, 2010 She might just have to share that.......Yum! I dread answering the phone every time it rings.....as does her Mum! I phoned to speak to my daughter earlier - she was in the office at the end of their garden and so Lauren answered................"Mummy's in the office, I'll just run and take the phone...." - this involves going across the decking, across the lawn and up a few steps....... I'm shouting down the phone "don't you dare run - it's raining - it will be slippy" - she made it safely and handed the phone over, then I heard "Lauren!!!! why haven't you got the sling on - I left you with it on......get it back on NOW!!!!" Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 25, 2010 Author Share Posted March 25, 2010 Just looking at that smilie - it just reminds me of Jake with chocolate Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted March 25, 2010 Share Posted March 25, 2010 Sounds as things are moving in the right direction at last. It is a shame that she may have to change schools, but it does seem that they haven't pulled out all the stops for her. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 25, 2010 Author Share Posted March 25, 2010 She's OK about maybe changing school - she's quite laid back. Her present school is old and very big - lots of classes on five floors. Due to all the bullying at primary school she hasn't got close friends at school and would be fine at moving and perhaps making new friends. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted March 25, 2010 Share Posted March 25, 2010 In that case it sounds much more promising to find a nicer place to learn. Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted March 25, 2010 Share Posted March 25, 2010 ....One of the others ...(school)...is very new and has lifts and each child has a locker. My daughter and SIL are going to see the head and see what can be done. The Consultant is also already looking at a referral to the residential physio course they hold at Birmingham's Childrens' Hospital - DD did ask about GOSH but Consultant feels that the one in Birmingham one would be more suited to Lauren. Both of these seem to be very good ideas. Birmingham Childrens Hosp. would be particularly appropriate I'd have thought, that would be excellent. I like the sound of the other school too. She can't be any worse off, & I'm sure she'd settle well. "Holding in Tshirt" sounds promising. Best wishes to you all Lesley. xx Quote Link to comment Share on other sites More sharing options...
Lewis Posted March 25, 2010 Share Posted March 25, 2010 I thought about the tight sports tops the other day - dads physio said to get some for his back, they're meant to improve his shoulders/posture. Hope Lauren gets on ok when she's referred, a change of schools may be good, especially if it would be better for her Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted March 26, 2010 Share Posted March 26, 2010 Hopeful news, though why you have to stamp your feet to get it is very irritating Poor Lauren re the running with the phone....she has the mind and agility of a child with no problems, she obviously forgets that she needs a cotton wool layer, which in some ways is good...ie it's not getting her as down as it could...though not good as this could be one reason for some of the accidents .........a rock and a hard place situation I hope things come together with the school move or the old one gets it's act together I like the idea of the special t-shirt, I wonder why this hasn't been suggested before as it seems a very simple aid? Sha x Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted March 26, 2010 Share Posted March 26, 2010 Poor girl And to think that not long ago she was so active - Wasn't that far back that she and Rosie were bouncing on your trampoline. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted March 26, 2010 Share Posted March 26, 2010 Poor girl And to think that not long ago she was so active - Wasn't that far back that she and Rosie were bouncing on your trampoline. I can just imagine Lesley hyperventilating at the very thought of that happening now Sha x Quote Link to comment Share on other sites More sharing options...
