Ain't Nobody Here Posted December 29, 2010 Share Posted December 29, 2010 Poor girl . It certainly helps me put things in perspective, hearing about what you all have to go through . Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted January 10, 2011 Share Posted January 10, 2011 So, a couple of weeks later, how is L. doing? January is whizzing along, is she due at GOSH again soon? Quote Link to comment Share on other sites More sharing options...
penelope Posted January 10, 2011 Share Posted January 10, 2011 Hi Lesley Sorry to hear about L's lastest...just keeps going on dosen't it? I am so glad that our 2 girls have been chatting on skype a bit....they were comparing popped out fingers & strapped up hands yesterday as I have just dislocated another knuckle & streatched the ligaments & H did the same a few weeks before! I am really glad to hear that she was "allowed" to go sledging over Christmas. My theory( rightly or wrongly) is that if I can dislocate my shoulder by putting my arm in my sleeve,snap my cruciate by standing on 1 leg & over straightening it & my daughter can pop her joints by sitting wrongly then we might as well have some fun & take a chance. I have injured myself rarely when I am exercising as my muscles are working harder. Most of mine happen when I am relaxed or asleep.Having said that H has decided that rollerblading was too much pain after the injuries of falling! I hope the physio is going ok.......the novelty quite quickly wore off with H 7 we tried all sorts to keep her doing it...not being able to ride or being in lots of pain when she does not do it is priobably the best insentive. Hope to meet up one day soon? Take care & keep smiling X Quote Link to comment Share on other sites More sharing options...
Lesley Posted January 10, 2011 Author Share Posted January 10, 2011 Teabag - she's doing well thank you, just the usual everyday stuff, fingers crossed it stays that way. I took her swimming last Thursday while I did Aquafit, an hour is a long time when you're on your own so eventually she came to the barrier and chatted to me. One woman insisted on swimming right along the barrier even though that side of the pool was virtually empty. I asked her to move over but she ignored me and eventually she wallopped L's shoulder as she powered past - I had to get L over in the Aquafit side which she isn't supposed to do as you have to be 16. They're still waiting for the next GOSH appt. Pen - poor you, hope the kuckles are OK now? It is tricky when even simple things cause dislocations isn't it. L's mum let's her do what she feels like doing and we all keep everything crossed I'm glad the girls have been chatting and it would be good for them to meet up sometime. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted January 11, 2011 Share Posted January 11, 2011 Lesley - let me know if L wants to go swimming with Rosie, she'd be more than welcome and Rosie would look out for her. Quote Link to comment Share on other sites More sharing options...
Lesley Posted January 11, 2011 Author Share Posted January 11, 2011 I will tell them Clare - at the moment she's not allowed to go without an adult, not since she struggled in the deep end when another child kicked her shoulder out when he was turning. It's quite difficult to get an adult sized child with a dislocated shoulder out of the water and I'd hate that to happen to Rosie. Child? - she'll be 13 tomorrow - how did that happen? Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted January 12, 2011 Share Posted January 12, 2011 Yes, Rosie is 13 too in a couple of months. She's done her lifeguard course by the way Quote Link to comment Share on other sites More sharing options...
Lesley Posted February 14, 2011 Author Share Posted February 14, 2011 Another update..... Lauren is at Warwick again tonight - her thumb She said on Saturday night when they were sleeping over that it was coming out and it would only be a matter of time I strapped it in the cast and it as OK....not right but OK. This is her 5th visit to Warwick A&E this year so far - mostly dislocating shoulder which just won't stay in. Carl and I had to go over and babysit J at 10pm on Thursday as her shoulder as out, SiL was in Doncaster with work. None of us got to bed before 1am. She's also having painful problems each month and she could really do without that on top of the daily pain in her joints GOSH's OT phoned DD today - she didn't even know that Lauren had been referred to the OT as she has her own OT back here anyway. The OT actually listened and agreed that the problem isn't managing the pain and fatigue (although that is a problem) but the management of so many injuries that are so disruptive. She has said that she will be at the next GOSH appt. and will impress on the team that L needs an individually tailored plan and not the routine physio which she had before Christmas..........Hallelujah!!!! - why they couldn't have discovered that in the first week that they were at GOSH I don't know. The OT tried to give them an appt for the beginning of March but it's too short notice for DD and SiL to sort out work and so it will be April. Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted February 14, 2011 Share Posted February 14, 2011 Thanks for the update Lesley, you describe it all so well. I'm so sorry there have been further incidents, with all that entails too. I'm pretty sure that a GP should be able to lessen the monthly pain, it's rotten to endure that too, maybe worth discussing? Amidst this, I'm relieved about the GOSH OT, a useful ally by the sound of it, and April will come soon enough. Love to all the family as always Do keep us posted meanwhile. xx Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted May 28, 2011 Share Posted May 28, 2011 Goodness, where have 3 months gone? I was chatting to Mother about your farm, and she asked after Lauren, any updates? Is she still OK with the internet schooling, and how are her joints? Fingers crossed Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted May 28, 2011 Share Posted May 28, 2011 Hopefully your silence means all has been well ? Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted May 28, 2011 Share Posted May 28, 2011 Anyone else notice that EDS got a mention on Corrie last night? Evidently that is what Izzy Armstrong has. It might up the public awareness of the condition .... which is no bad thing. Quote Link to comment Share on other sites More sharing options...
Lesley Posted June 1, 2011 Author Share Posted June 1, 2011 I think the EDS forum were hoping she would make it a bit higher profile - at least there has now been mentioned. My silence has been more to do with the frequency of Lauren's problems rather than a better scenario I'm afraid She's really not having a good time. She has now had 20 visits to A&E with dislocations this year and about 4 dislocations where her Mum and Dad have relocated the joint themselves. She's supposed to be fast tracked through A&E but what happens is that she is triaged straight away but then is left in the children's waiting room for hours - the longer a joint is stuck in a dislocated state then the more damage is done to lax ligaments. My daughter is taking it up with patient liaison. She had a GOSH follow up appointment last week and it was agreed that she would not benefit from more of the residential group physio and they agreed to work closely with Lauren's physio here whom she sees once a week. Lauren is staying overnight tonight and has had her physio here today - she says 'everything feels loose' and she usually only has a maximum of 72 hours before she dislocates something when she feels like that - I've made her wear her thumb splints to bed. On top of all that she is having pretty severe problems each month - I was hoping she'd take after me but she obviously takes after her Mum Internet school is wonderful! - I went along with my daughter to a meeting with the head of year at the school where she is still registered but he agreed that going back into the system wouldn't be right for Lauren. The inclusion lady was there as well and they are very impressed with Interhigh and are prepared to back any claim by L's parents for help with funding - it costs one third of what it would cost to keep her in school and the offer of home schooling from the LEA is only for 2 hours per week - and is unlikely to improve with all the cuts. Lauren loves Interhigh and is doing really well. She does her homework straight after school has finished and if she's in hospital - or has been there half the night - then she completes her work online and is not behind at all. Sorry - trying not to write essays and bore everyone Quote Link to comment Share on other sites More sharing options...
chickencam Posted June 1, 2011 Share Posted June 1, 2011 Don't worry you don't bore me and I sure I can speak for most people on here. I really feel for Lauren and the rest of your family with this, growing up is hard enough without having to cope with all of her other problems. You sound like a really supportive family and I for one look out for regular updates on Laurens progress. I hope that your suspicions about feeling loose don't come to anything and that she and you can enjoy the better weather over the next few days. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted June 2, 2011 Share Posted June 2, 2011 Sorry to hear that Lesley, send Lauren our love. Quote Link to comment Share on other sites More sharing options...
Seagazer Posted June 2, 2011 Share Posted June 2, 2011 Goodness Lauren really does go through it doesn't she (and the rest of you). Sending you all my best wishes. Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted June 2, 2011 Share Posted June 2, 2011 Sorry to hear that things are still rough, but am really pleased that the schooling is working out well for her.xx Quote Link to comment Share on other sites More sharing options...
Goosey Lucy Posted June 2, 2011 Share Posted June 2, 2011 Brilliant news about the internet school but I'm sorry to hear Lauren (and the rest of you) are having such a difficult time. Quote Link to comment Share on other sites More sharing options...
abwsco Posted June 2, 2011 Share Posted June 2, 2011 Lesley, sending loads of {{{{{{HUGS}}}}}} to you all. I've missed this thread somehow before Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted June 2, 2011 Share Posted June 2, 2011 I'm so sorry things haven't been good . It is good news about the internet schooling though . (And you could never bore us so please don't think that .) Quote Link to comment Share on other sites More sharing options...
Lesley Posted June 2, 2011 Author Share Posted June 2, 2011 Thank you all - I always feel better for posting in here We went strawberry picking this morning as I didn't dare take her to the swimming pool on my own and Carl couldn't take 3 hours off. We took a camping chair with us but she only had a quick sit on it twice and picked a fair few strawbs for me. Nothing dislocated on my watch! She's back home now....... Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted June 2, 2011 Share Posted June 2, 2011 Phew, well done. When she's an adult she'll look back and remember lovely things like strawberry picking with you. Thanks for the updates, and all the best to all the family. Quote Link to comment Share on other sites More sharing options...
Cate in NZ Posted June 3, 2011 Share Posted June 3, 2011 Just caught up with this. To echo Sheila thank you for the updates, and thinking of you and the family. Sounds like you've all had a tough time, especially Lauren, but it sounds like she's proving to be a strong young woman. Take care Quote Link to comment Share on other sites More sharing options...
Lesley Posted June 30, 2011 Author Share Posted June 30, 2011 Why is life so **** difficult at times????? Lauren's shoulder has been dislocated for 11 days and will not stay back in place - having it relocated is, she says, like standing on a sharp nail and being told to push your foot down harder! She's been seen three times and she's waiting for a special brace to hold the arm out at 45 degrees so that the muscles learn to hold it in the right position instead of being constantly in spasm. She has her end of year exams this week and although they're not important in the grand scheme of things they are important to her and she really wanted to do them. Between us we've been scribing or she's been using voice recognition software, I scribed for her French exam and the school provided on over the telephone scribe for her Spanish. On the evening we were at hospital when Lauren first dislocated it her brother broke his foot and is on crutches. Then, just when you think things can't get much worse she badly dislocated her other shoulder in her sleep last night Another midnight trip to A&E.....another (different) doctor so all the explanations have to be made. They were very good though and soon listened when her parents said she isn't allowed to have XRays - so many times they've had to argue and explain. The shoulder wouldn't stay in but this time it was a 'normal' dislocation, with the shoulder blade sticking out at the back, she usually has a dislocation the other way hence the need for a special splint. It was re-located but came straight back out. Entinox doesn't work well for Lauren but there's little else to use on a 13 year old. She has Oramorph as well and eventually it was relocated and strapped across her front with her hand on her opposite shoulder. If she has the special brace today - still waiting to hear as it reqires the Ortho consultant, the Orthotics man and Lauren's physio to all be at the hospital in their lunchtime (and for the brace to have arrived!) she will be totally immobilised in her upper body. She's 13, wrong time of month, and what 13 year old wants help like that from either Mum or Grandma??? We're finding it difficult to hold it together after this latest - smiles in short supply Sorry - just felt the need to rant....... Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted June 30, 2011 Share Posted June 30, 2011 Sorry to hear that Lesley, will catch up on Saturday. Quote Link to comment Share on other sites More sharing options...
