Helly Welly Posted March 2, 2010 Share Posted March 2, 2010 I can't believe i missed this thread but i've read through it all now (it took a while ) Firstly, i'm no expert but if there is anyone with any questions about Hypermobility, feel free to pm me or ask on here and i'll do my best to answer them. As you all like forums, try the forum of the Hypermobility Association. It can be really helpful and there is always someone to answer specific questions. If you search for answers first you'll probably find that someone has already asked it. It's the sort of forum where you can dip in as little or as much as you like, it's less chatty than here but still really friendly and there are child-specific sections. Lesley, it's brilliant that Lauren has a formal diagnosis now. Your daughter must feel awful though as now it's confirmed that something is wrong with Lauren and it's hereditary. The guilt can gnaw away at you, believe me i know, but in reality it isn't your fault, just a quirk of nature. In time, Lauren will see some benefits of being Hypermobile, though this may take years. Her skin will age much more slowly and remain super-soft for starters. It's also important to realise that collagen is the most widely distributed protein in the body and therefore a diagnosis of EDS 3 or HMS will affect more than just the joints. Lidocane injections at the dentist are quite unlikely to work properly, i have to have a lot more than normal. Needless to say, i tend to look after my teeth I have awful IBS and i really hope this doesn't affect Lauren as she has enough to deal with. But, i'm learning which foods trigger it and avoiding them so, fingers crossed, it'll settle down. I score 9 on the Beighton scale, though they tend to use other questions now which take into account previous flexibility, in which case i would score 10. I'm lucky in that i don't sublux/dislocate as badly as Lauren does. I know that The Hypermobility Association hold a two day conference sometime in Septemer, i went two years ago and it was brilliant, very informative with the main experts from around the UK there. GOSH also hold a two week residential programme for children which may be of some use to Lauren, it's worth asking your GP. Yu know where i am if you need me Lesley and feel free to pass on my email to your daughter if she wants to ask me anything directly. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 2, 2010 Author Share Posted March 2, 2010 Thanks Helen - I'm glad you've caught up I am a member on the EDS and the Hypermobility forums and must make time to read more on there. Also good that the powers that be have now managed to get round to linking, and renaming, EDS type 3 (EDSh) and Hypermobility Syndrome as Benign Hypermobility Syndrome. I know you mentioned this last time we chatted. My daughter herself has only mild symptoms so far, as does her brother. It is me who has more of the range. I have had dental problems for years without knowing why and have 'Horse doses required' written on my notes. I was diagnosed with IBS about 15 years ago and had a bad bout of Divericulitis over Christmas 2008. It has been like a big family jigsaw falling into place. My mother is also making sense of problems she has had for years and since Lauren's diagnosis he has decided to take notice - she's in a completely different part of the country and he said "oh, I've not come across any cases of EDS in all my years....." - as if that makes it unlikely that she has it. My sister has also had collagen problems and was told she had " rubbish collagen" - before Lauren started with her problems. The residential courses sound very informative - now that we have formal diagnoses it will be easier to speak to the GP's concerned, instead of being fobbed off. I've continued posting as I know a couple of others said that they had similar problems. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 12, 2010 Author Share Posted March 12, 2010 I thought I was going to come here tonight to say that Lauren had completed a whole week at school - she went off this morning for the fifth day in a row.......something she hasn't done since October, shortly after moving to secondary school. Then I had a phone call at 11 to go and fetch Lauren from school and we've spent the rest of the day at Warwick A&E. She'd been squashed in the corridor and her wrist was bent against a windowsill - she heard a crack and had no feeling in her fingers. She's fractured the end of her radius, near the thumb. She now has both hands out of operation! It's such a shame as my daughter and SIL have just booked a break over the Easter holidays and Lauren was looking forward to swimming. She has one hand in a splint and the other in plaster. She has a plastic cover which will cover the plaster so she may be able to go in the pool but not to swim much. To make matters worse the OT turned up just after she hurt herself, for the appt. we've been waiting for since last May!! She couldn't assess her properly as she was in pain and couldn't use either hand . .....and on top of that her follow up appt. for her thumb arrived in the post this morning.....it is for Monday at 2pm, the nearest they could get to that for her fracture to be replastered is Monday at 8.50 - and it probably won't be worth coming home in between as the Fracture Clinic always runs late. Sooooooooo frustrating! Lauren had a packed lunch with her but I didn't dare nip off for a sandwich as the shop is too far away from A&E so I didn't get my lunch until 4.30 . Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted March 12, 2010 Share Posted March 12, 2010 Oh no, poor Lauren. Can they not provide her with someone to prevent her being jostled? Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted March 12, 2010 Share Posted March 12, 2010 Poor little love, it must be so frustrating for her and you all. Huge but gentle {{{hugs}}} Sha x Quote Link to comment Share on other sites More sharing options...
Snowy Posted March 12, 2010 Share Posted March 12, 2010 Oh no, poor Lauren, she must be soooo frustrated (((gentle hugs))) from me too.xx Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 12, 2010 Author Share Posted March 12, 2010 She has had a 5 minute pass so that she can leave each class 5 minutes early and have time to walk carefully to the next.......for some reason it was taken off her when her leg was out of plaster....... She even did games this week - gymnastics and ribbon twirling! Quote Link to comment Share on other sites More sharing options...
ClaireG Posted March 12, 2010 Share Posted March 12, 2010 Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted March 12, 2010 Share Posted March 12, 2010 Oh Lesley, I'm so sorry. Quote Link to comment Share on other sites More sharing options...
chelsea Posted March 12, 2010 Share Posted March 12, 2010 Poor Lauren, I really feel for her and all the family. I don't know how you all manage - but you do! Take care ((hugs)) x Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted March 12, 2010 Share Posted March 12, 2010 Send my love to Lauren, poor thing. It really seems like one thing after another Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 12, 2010 Author Share Posted March 12, 2010 Thanks for all the best wishes It is very worrying and wearing at times. My daughter, Lauren's Mum, is trying to get a new business off the ground and is pulling her hair out, she spends every day dreading these phone calls. She was actually on the phone trying to sort something out for Lauren when the call came this morning. I'm lucky that I work part-time from home so I can just get in the car. .....and every time one of us takes Lauren to A&E we quiz her in such an accusatory manner - I did it again today Her Dad refused to take her to A&E once, saying that she'd be fine - an hour later he relented and took her and was eventually told that Lasuren had fractured her elbow and dislocated her shoulder She has a high pain threshold and suffers quietly. Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted March 12, 2010 Share Posted March 12, 2010 It's easy for your fears and frustrations at her condition to come out as accusations, i'm sure she understands. She's an intelligent girl. When i was at high school, there were two covered walkways that only teachers and sixth formers were allowed to use; is there anything like that that Lauren could use at her school. I'd also push for her five minute permission slip back, it sounds to me like she has reasonable grounds. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 12, 2010 Author Share Posted March 12, 2010 It's easy for your fears and frustrations at her condition to come out as accusations, i'm sure she understands. She's an intelligent girl. I hope she does! - she has to put up with "are you sure it hurts? are you sure you heard a crack?" how much does it hurt on a scale of 1-4?" I found out that she hasn't been using the pass as since her knee gave way and her shoulder dislocated when she fell that she's not to be on her own. I think my daughter will have to see if the school will let someone leave early with her. She's still trying to sort out the school bus as Lauren frequently has to stand and as she's a lowly year 7 no-one will give up a seat for her Lauren does finish 5 minutes early so that she can get to the bus and have a seat on the way home. Quote Link to comment Share on other sites More sharing options...
Lewis Posted March 13, 2010 Share Posted March 13, 2010 Not again, and just as things were improving too. I'd try and get the 5 minute pass back even if she can't always use it, just so its there in case. Would she be on her own if she fell walking to or from lessons or could she be near a classroom to get a teachers help if needed. Can she write, or will her school work be affected? At school when people have broken wrists etc. they've had classroom assistants making notes for them to help, or had them photocopied from someone else/printed off to make things easier. Quote Link to comment Share on other sites More sharing options...
henriette Posted March 13, 2010 Share Posted March 13, 2010 Oh Lesley, I can't believe that the school/system is unable to help Lauren more. What does her SENCO say? We are thinking of you and send you all lots of Mxx Quote Link to comment Share on other sites More sharing options...
AnnieP Posted March 13, 2010 Share Posted March 13, 2010 Oh Lesley! I am SO sorry to read that Lauren is continuing to suffer. It must be so wearing for you all. I find it hard to understand why the school has not pushed for a statement for her. I would have thought in this day and age of litigation they might begin to get worried that you could get rather hot under the collar about the provision they offer and health and safety etc, duty of care....... I would ask for a joint (sorry for the pun) appointment with the school nurse and SENCO. Lauren should already have a care plan in place and this needs discussing as it clearly isn't quite right, if she is getting injured at school still! More battles, sorry Lesley! Thinking of you xx Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted March 13, 2010 Share Posted March 13, 2010 Gaaaahh! Sorryt o hear that Lesley. Send her our best wishes for her recovery. Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted March 13, 2010 Share Posted March 13, 2010 Hugs and best wishes from me. I don't know what else to say . Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 13, 2010 Author Share Posted March 13, 2010 (edited) Thank you all. It's all coming together - albeit slowly. As Lauren didn't have her diagnosis until December there wasn't a lot we could do. The school have actually been very good in most aspects and had set up a care plan in the week that Lauren hit this next phase of dislocations. The school weren't aware of the extent of the problem because her primary school hadn't let them know so it was all dealt with from start of school in September. The school took note and Daughter and SIL had a meeting with the school nurse and head of year, set up the care plan and then just a couple of days later the dislocations started again. The OT appt. would have been very useful as we were hoping that she would have seen Lauren while she was still at primary - we think the school didn't push as we think they decided that Lauren was making half of it up.....or that we were a family of child abusers. Nearly all of Lauren's injuries have happened at school and the nature of the EDS is that there isn't always a cause - she just ends up on the floor in a heap and with another dislocation. That is also the problem if she uses the 5 minute pass and leaves the classroom on her own - that's the next thing to work on I think. We hope the OT is going to go back to the school for her assessment and she should arrange to go to their house as well. Lauren already has special pens and we got back yesterday to a batch purchase of 'fingertip pens' which her Mum had ordered. A laptop isn't a good alternative as her hands are painful most of the time but the school have been using a TA as a scribe for her at times. Thanks for all the advice and comments - it does help for us to know what is available and where we should be pushing for things to happen. My daughter has gone down with a bad migraine today - another stress induced one Edited March 13, 2010 by Guest Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 13, 2010 Author Share Posted March 13, 2010 I ran out of space! We will be having Lauren and Jake to stay in the Easter holidays, either side of their holiday so we've been looking for somewhere to take them - we've decided to hire a wheelchair for the two weeks just to use for the boring 'walking' bits in between, so that Lauren can actually enjoy what we go to see - which is how I spent my 50th at the Eden Project She doesn't want a wheelchair any more than I wanted one but they do come in handy for the boring bits. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted March 13, 2010 Share Posted March 13, 2010 Oh poor girl - not again. We'll have to donate some bubble wrap at this rate. Lots of hugs for everyone, especially Lauren. Quote Link to comment Share on other sites More sharing options...
theherd123 Posted March 13, 2010 Share Posted March 13, 2010 Im so sorry to read that Lauren is suffering again and as a result you all are too. As AnnieP said the school needs to be looking at sorting out a statement and her care plan needs to be looked at in more detail esp with her getting crushed in corridors - this is not acceptable. Maybe they need to look at providing her with an older escort who could help when they have study periods by assisting her from class to class. This may also work as word would get around and im sure Lauren would find lots of others looking out for her. Quote Link to comment Share on other sites More sharing options...
Lesley Posted March 14, 2010 Author Share Posted March 14, 2010 I thought I'd come and show you this photo of Lauren taken just after we'd all been out for lunch......... ....and then 20 mins after I took this she slipped in the bathroom, twisted her wrist somehow (the one in the splint, dislocated thumb one) and hit her head on the bath.........Lauren, Mum and Dad are now at Warwick A&E Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted March 14, 2010 Share Posted March 14, 2010 Oh no, poor girl . That's a lovely photo, what a pretty girl she is . Quote Link to comment Share on other sites More sharing options...
