penelope Posted August 25, 2010 Share Posted August 25, 2010 Hi Lesley I am so glad to hear that you have had some good advice about Laurens shoulder. My daughter and I have eds as you might remember & its only by seeing the right specialists & Profs that we have finally had the help we need.We dare not go to our local A&E any more as they just don't get it! My shoulder was dislocating for 3 years to the point that it would go out more than it was in. I saw a fantastic Prof and with 2 years of help from Stanmore it now behaves itsself most of the time. I had to use machines which showed which muscles I was using(even lying down) & had to learn how to hold my shoulder in the correct place by using the bio feedback machine. It took years of feeling like it was never going to work as I had to totally re learn how to stand & move & lye.but now its almost level with the other one. My daughter was admitted for GOSH 2 weeks programme which got her running again & really made a difference to her pain. I am under a prof in Queen Square in london who has also sorted out the PoTS to the degree that I no longer take medicine for it & I have not blacked out for at least a year or two. I have just had my ankle ligaments replaced due to my ankle being totally unstable for a year so its all hospitals & daily physio again...... pretty normal for us really!! Its really hard not to let them do something that others take for granted such as a trampolene. Its the one thing that my daughter is really discouraged from as the whiplash she gets & the knee pain is pretty bad. She rides horsses insted, good physio but not so great when things go wrong!! Take care & keep smiling & just wait for the physio to make her even stronger, it really makes a difference. If she wants to talk to my daughter she is often on skype too. xx Send Lauren our love & tell her to keep up the physio . XX Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 25, 2010 Author Share Posted August 25, 2010 Thanks - I'll pass all that on to Lauren, it's good to hear from people who have been through similar.The bio feedback stuff sounds interesting. I'm lucky that I only have mild to moderate problems now....my ankles, thumbs and jaw are the worst at the moment. Quote Link to comment Share on other sites More sharing options...
penelope Posted August 26, 2010 Share Posted August 26, 2010 Hi lesley I have sent a reply to your pm......hope I did it right! I've got 1 really good arm...........& nice hair!! The rest keeps falling apart on a regular basis. I was going to attempt to sail again for the first time in a year & since my ankle surgery but it looks like I will have to wait a bit longer if the wind keeps up. Say Hi ti lauren & I hope our daughters can get to know each other to compare wobbly bits! Take care Penelope Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 26, 2010 Author Share Posted August 26, 2010 Yes, I've had the PM - many thanks. I'll pass all the details on to my daughter and I'm sure Lauren will welcome someone to chat to who understands all the little (and not so little ) problems they encounter every day. My TMJ dislocated whilst I was eating curry the other night! - hardly a hard chewing exercise I watch Gok Wan's programme and often wonder how he'd get on with EDSers - his answer to problems seems to be tight underwear and very high heels He'd struggle to get bendy people into high heels. I hope you manage to get back to sailing. Quote Link to comment Share on other sites More sharing options...
Lewis Posted August 26, 2010 Share Posted August 26, 2010 Glad she's been better for a few weeks, and that the appointments are finally coming through, with the right people Hopefully all steps in the right direction Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted August 27, 2010 Share Posted August 27, 2010 Sounds good, Lesley. Just make sure she doesn't do wheelies in the wheelchair like OH when he had to be in plaster for several months. He got quite good at going round on 2 wheels, but the practice sessions when his folks were out left him stranded on the floor many a time. Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 27, 2010 Author Share Posted August 27, 2010 - he would!! Lauren would have a bit of a problem with wheelies......her shoulders would pop out She either has to be pushed or will need a motorised version. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted August 27, 2010 Share Posted August 27, 2010 I'm sure she'll customise it in her own way! Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted August 28, 2010 Share Posted August 28, 2010 - he would!! Lauren would have a bit of a problem with wheelies......her shoulders would pop out She either has to be pushed or will need a motorised version. I saw a wicked wheelchair adaptation today. It was an attached one wheeled hand cycle, so that the wheelchair was effectively a hand-pedalled trike. The lady had no problem in shops either. Something like that might be good for Lauren Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 28, 2010 Author Share Posted August 28, 2010 Sounds interesting - I'll have to have a look. I suppose it would depend on whether her thumbs are in plaster or not. She had a test drive in a motorised one and I was amazed at how easy it was to control with any part of the hand - she had her hand in plaster and could operate it with the side of her hand. Quote Link to comment Share on other sites More sharing options...
Lesley Posted September 1, 2010 Author Share Posted September 1, 2010 Lauren had her assessment at GOSH this morning - we're still taking it all in She saw a physio in Prof, Grahame's clinic and she said that Lauren was one of the most hypermobile children she'd seen A surprise as some of the other professionals we've seen have said that, given all her injuries and dislocations, that she wasn't as hypermobile as they thought she would be. The physio said that all that was holding Lauren's body together was her muscles......and they are only operating at 30% capacity She has fast tracked Lauren onto a three week, residential, intensive physio course, She will go in November. She also said that the lycra suit is doing more harm than good and she must stop wearing it Lauren was delighted as she's complained bitterly about it hurting to the stage where we had a falling out over it .....and ....the physio took one look at Lauren's brother lolling on a chair while he waited and said "you know he is very hypermobile don't you? - don't let him give up playing all the sport he does" ......and......still no injuries Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted September 1, 2010 Share Posted September 1, 2010 Goodness, that is a lot to take in, but I'm so pleased they have fast tracked the residential stay and she is getting the proper medical help now. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted September 2, 2010 Share Posted September 2, 2010 That's a great result Lesley, hopefully Lauren will see the benefits soon. Quote Link to comment Share on other sites More sharing options...
Snowy Posted September 2, 2010 Share Posted September 2, 2010 That does sound very positive! Quote Link to comment Share on other sites More sharing options...
Helly Welly Posted September 2, 2010 Share Posted September 2, 2010 That's fantastic, Prof Grahame's team are great. I saw them at UCHL and was so impressed with how they just get to the problem and find solutions. It's great that her brother is so sporty, it means that his muscles are stronger and doing the job that the tendons don't do. Hopefully, with time, Lauren will get to that stage too. At least she's now in the right place to start making progress, i'm so pleased for you all Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted September 2, 2010 Share Posted September 2, 2010 Yayyy good news! Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted September 2, 2010 Share Posted September 2, 2010 Very encouraging. Quote Link to comment Share on other sites More sharing options...
Lewis Posted September 3, 2010 Share Posted September 3, 2010 Really good news! Quote Link to comment Share on other sites More sharing options...
Purplemaniacs Posted September 3, 2010 Share Posted September 3, 2010 Glad to hear that GOSH are getting things sorted out, sounds very positive. I used to work at GOSH, great place. Best wishes Chrissie Quote Link to comment Share on other sites More sharing options...
chickencam Posted September 3, 2010 Share Posted September 3, 2010 Lovely to hear about the positive progress for Lauren Quote Link to comment Share on other sites More sharing options...
Lesley Posted September 3, 2010 Author Share Posted September 3, 2010 Thanks for all the replies It was such a positive appointment and the physio was herself hypermobile - it made so much difference to Lauren's attitude! Lauren has been feeling a bit down about it all but the physio told her "we will get this sorted for you - you won't ever be free from it but we can make it easier to manage" Lauren has felt so well through the summer and hasn't had any injuries since June - we took them out yesterday and both L & J were climbing a big willow tree I was looking through my fingers but I know we have to let her do what she feels able to - it's a bit stomach churning at times! We were at Hatton Locks and I'd rather she fell from the tree than fell in one of the locks She was only a few feet from the ground - enough to feel 'normal' She still can't walk very far without pain but it was a lovely place to visit and now we know that it is suitable for any level of ability/disability so we can go and visit the cafe any time. She's looking forward to the 3 weeks of physio and knows it will be hard work. (I think she's hoping to get back to all the sport she used to do - unlikely but you never know ) Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted September 3, 2010 Share Posted September 3, 2010 That sounds ideal for her, I hope that she can get back to being active again, she must miss it so much. Let me know if you want me to bring Rosie over; they can go for a girls ramble around the farm like they used to. Rosie is pretty sensible and will watch out for Lauren. Quote Link to comment Share on other sites More sharing options...
sari Posted September 6, 2010 Share Posted September 6, 2010 I haven't read all the posts, but a few, and would like to reassure you taht even with the most severe form of hypermobilia, a "normal" life can be lived. My sister in law has score 9 hypermobilia and Lupus, and has 2 jobs, one of which is a Vintage hair and beauty stylist. She has just passed her driving test, and dances LindyHop...I suppose what I'm trying to say is, it can be a shocking diagnosis, and seeing C's hips come out for the first time was a shock, but we are used to her popping in and out now, and flinging things ( this is part of her symptoms). It can be a tough journey, but C lives a great life, and I hope your daughters gets all the support she needs. Regards sari x Quote Link to comment Share on other sites More sharing options...
penelope Posted September 6, 2010 Share Posted September 6, 2010 Hi There So glad you had a good result for Lauren. My daughter was admitted for the 2 week programme a few years ago & it made a huge difference. It was really hard work & you both will be absolutly k******ed at the end of every day but it mades such a massive difference to kick starting my daughter back to being able to walk & run again. She still talks about it now & enjoyed all the special things that happened when we were there( a cooking lesson by chefs from the ivy, a meet & pat of some police horses, a chance to be part of a bbc filming,guides & loads more.) There wre kids there who were in a wheelchair at the begining of the course & walking & running at the end. They overlap the course so there are newcomers each week. Just get lauren to email us if she needs to know more. Exercise is the only way back to "normality" for my daughter & myself as the bigger our muscles the less we hurt ourselves.......not always easy! Great news, hope it happens soon. Take care Penelope Quote Link to comment Share on other sites More sharing options...
Lesley Posted September 7, 2010 Author Share Posted September 7, 2010 Sari - thanks - it's good to hear how well your SiL has done I wish Lauren's joints popped in and out - they only do the out bit and get stuck which is then a bit of a problem. Penelope - good to hear how the course went for you. Lauren now has her own email address and my daughter passed your daughter's details on to her today so she'll probably be hearing from Lauren soon. My sister was told by her GP that she didn't have EDS but has since been told by her Gynae and her Urologist that she most definitely does and it accounts for the problems she has had since having her daughter 9 years ago. She had to see a physio today who confirmed that it does explain those problems and she was glad to be told as she can now work with that. Quote Link to comment Share on other sites More sharing options...
