Olly Posted July 18, 2011 Share Posted July 18, 2011 Gosh Lesley, this is a bad spell isn't it. Don't forget to look after yourself in all this, sounds as if you are struggling a bit too. Fingers crossed that Lauren can at least get some pain relief - I know she doesn't want to be admitted to hospital but it might be better if she was in for a short period to get this sorted out. Keep us updated - and enjoy the play! Quote Link to comment Share on other sites More sharing options...
Chickendoodle Posted July 18, 2011 Share Posted July 18, 2011 Oh the poor poor girl. Life is very unfair sometimes. Sending very gentle hugs Quote Link to comment Share on other sites More sharing options...
bluekarin Posted July 18, 2011 Share Posted July 18, 2011 Oh no! The poor thing. That sounds really frightening for her - an all of you. I hope she is getting the help that she needs. Maybe a nerve got pinched when her shoulder was relocated? Things get so bad like this and you just can't see a way out of it, but I am sure she will turn a corner, and I hope that it is soon (((hugs)))) to you all. My ED's school phoned today about the possible problem with her taking art GCSE from September as the art room is upstairs. We've really go to get her walking otherwise I fear she may have to take something else instead, and the art was meant to be her 'fun' GCSE It's a small thing compared to everything, but when she is limited to what fun things she can do, anything that's taken away, potentially, is just so unfair. Makes me want to stamp my feet like a petulant child.......among other things Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 18, 2011 Author Share Posted July 18, 2011 I know - Lauren really wants to take science but a. she's not in school now and b. she has only been offered two hours home tuition and they won't offer practical science. I hope your daughter makes it to her art classes...... Lauren's MRI showed prolapsed discs - Paeds tried to send her to Orthopods and they want her to go to Birmingham to see the Neurosurgeon.........somebody told her she could eat as she'd been nil by mouth all day - as soon as she'd eaten a sandwich they said she should stll be nil by mouth..... We're just heading to Warwick as she wants visitors - may have to detour to Birmingham en route....... Quote Link to comment Share on other sites More sharing options...
Patricia W Posted July 18, 2011 Share Posted July 18, 2011 Lesley, my thoughts are with you all. But how this all shows what a united family you are- thank goodness. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted July 18, 2011 Share Posted July 18, 2011 Big gentle hugs Lesley xxx Quote Link to comment Share on other sites More sharing options...
Goosey Lucy Posted July 18, 2011 Share Posted July 18, 2011 Hugs from here too. So sorry you all have to go through this. Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 18, 2011 Author Share Posted July 18, 2011 Thank you for the hugs We managed to see Lauren at Warwick and she's now been transferred to the neurological team in Birmingham. Her legs are still numb from the thighs down so I hope they sort it all out soon. Quote Link to comment Share on other sites More sharing options...
SarahJo Posted July 18, 2011 Share Posted July 18, 2011 Massive hugs to Lauren - gorgeous, brave girl - and a bottle of "extra strength" for you and the family Lesley! Look after yourself too - {hugs} Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted July 18, 2011 Share Posted July 18, 2011 You're all in my thoughts . I really don't know how you all keep going. Quote Link to comment Share on other sites More sharing options...
TheGirlsMum Posted July 18, 2011 Share Posted July 18, 2011 My thoughts are with you all, you are afantastic family network. Quote Link to comment Share on other sites More sharing options...
Plum Posted July 18, 2011 Share Posted July 18, 2011 Sending you heaps of good wishes to help you keep going and lots of hugs for you Lesley. x Quote Link to comment Share on other sites More sharing options...
Sheilaz Posted July 18, 2011 Share Posted July 18, 2011 Just logged on Lesley, and I'm so sorry to hear of the latest developments. What a terrible time Lauren's having, I do hope Birmingham hospital can bring her some relief. Love and best wishes from us all xx Quote Link to comment Share on other sites More sharing options...
Egluntyne Posted July 19, 2011 Share Posted July 19, 2011 Sending best wishes. xx Quote Link to comment Share on other sites More sharing options...
bluekarin Posted July 19, 2011 Share Posted July 19, 2011 Just heard from Bath hospital who are specialists in her condition and have told me the best way to get help. Fingers crossed she will be walking by the end of the summer hols Just got to get her doctor or GP to refer her. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted July 19, 2011 Share Posted July 19, 2011 I'm so sorry to hear that Lesley, we're all thinking of Lauren and hoping that they can sort it out soon. Speaking from experience, prolapsed discs are extremely painful. Quote Link to comment Share on other sites More sharing options...
bluekarin Posted July 22, 2011 Share Posted July 22, 2011 Had a letter today and ED is on the waiting list to see the specialists in Bath I just hope the list isn't too long........... Quote Link to comment Share on other sites More sharing options...
gongladosh Posted July 22, 2011 Share Posted July 22, 2011 yep, all the best from us too Quote Link to comment Share on other sites More sharing options...
Plum Posted July 22, 2011 Share Posted July 22, 2011 Hope your ED gets the help she needs bluekarin Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 25, 2011 Author Share Posted July 25, 2011 Good news Karin! - I hope your daughter has an appointment soon. During the holidays would be good wouldn't it? Could you speak to the secretary dealing with the list and ask if you can take any cancellations? Lauren spent all week in Birmingham Children's Hosp. on a neuro ward but came home on Friday night. The OT visited a few times but not much help was offered My daughter was asked what would cause problems if Lauren went home and was told that getting upstairs would be the main problem as all facilities are upstairs apart from a tiny, tiny, cloakroom downstairs which is down 1 small step. The answer to that was a commode Lauren has a high bed at home to enable her to get out of bed and an arrangement of memory foam topper and pillows - the choice for her downstairs was to sleep on the sofa........the OT suggested that they put a mattress on the floor ..........for a child who is adult size, is a dead weight because she has no use of her legs and both shoulders frequently dislocating!!! If they could even get Lauren down on to the floor how on earth were they supposed to lift her back up? The Rheumatologist didn't ask questions about Lauren's schooling but was obsessed with her going back into mainstream schooling The Neuro people don't think that the paralysis is anything to do with the prolapsed discs but they don't know what is causing it........so basically 'go home and get on with it' Neurologists, Othopaedics and Paediatrics don't really understand EDS and complications arising from it so they play pass-the-parcel and hope that she will go away. The nurses though were excellent! Fortunately my Dad still had the special bed that my stepmother used before she died and so we were able to hire a van and collect it on Saturday morning and so Lauren is now set up in a downstairs room. She took a couple of steps yesterday - she's working hard to be able to get to the downstairs loo. We also had to buy her a wheelchair.....good job that mobility shops use next-day delivery! Definitely baby steps at the moment but she is a determined girl. Quote Link to comment Share on other sites More sharing options...
Chook n Boo Mum Posted July 25, 2011 Share Posted July 25, 2011 Lesley, I'm certain I posted yesterday ................looks like it didn't arrive on the thread though It was lovely to see you all yesterday...I hope Lauren managed to get comfy on her new bed & you all managed to get a good night's rest Love & gentle hugs to you all xx Quote Link to comment Share on other sites More sharing options...
Ain't Nobody Here Posted July 25, 2011 Share Posted July 25, 2011 Great news, Karin . I really hope it doesn't take too long . Lesley, how awful that the so-called specialists are being so unhelpful . Thank goodness Lauren is such a strong young lady and has such a caring, practical family around her. Quote Link to comment Share on other sites More sharing options...
bluekarin Posted July 25, 2011 Share Posted July 25, 2011 Neurologists, Othopaedics and Paediatrics don't really understand EDS and complications arising from it so they play pass-the-parcel and hope that she will go away. The nurses though were excellent! Definitely baby steps at the moment but she is a determined girl. Thank you all We had a letter from her consultant here who said the CAMHS in London can't help her as they have " a very high pressure on for referral"? Does that mean they are just too busy? He also said he's be interested in how she is going at the moment! I phoned last Thursday morning and was told he'd get back to me and he still hasn't. I feel like because he has no more answers, he isn't doing anything to help. I understand it is very frustrating as a doctor to have a patient who has something which causes a lot of chronic pain for no known reason, but the doctors need to think about the patient and how alone you can feel in this situation. Which is why I quoted the bits above from your post Lesley. Baby steps is the way to go. Bria put her foot down for 50 seconds, with it just touching the floor yesterday This is a huge thing considering she couldn't put it down at all a few weeks ago. She is determined to be on crutches by the end of the holidays, and I really hope it happens We bought her a small pedal bike so she can sit in her wheelchair and gently pedal to try and get some muscle back in her legs as atrophy has set in where she hasn't been using them for ages. All my best to Lauren, and you and your daughter (((hugs))) Quote Link to comment Share on other sites More sharing options...
Lesley Posted July 25, 2011 Author Share Posted July 25, 2011 Bria put her foot down for 50 seconds, with it just touching the floor yesterday This is a huge thing considering she couldn't put it down at all a few weeks ago. She is determined to be on crutches by the end of the holidays, and I really hope it happens We bought her a small pedal bike so she can sit in her wheelchair and gently pedal to try and get some muscle back in her legs as atrophy has set in where she hasn't been using them for ages. That's really good news Karin - I hope she continues to improve. I agree, it can feel very lonely trying to find the right help. Quote Link to comment Share on other sites More sharing options...
abwsco Posted July 27, 2011 Share Posted July 27, 2011 Just wanted to send loads of {{{{{{HUGS}}}}}} and positive thoughts to you Lesley, Lauren, Karen, Bria and families. It must be soooo hard for you all Quote Link to comment Share on other sites More sharing options...
