Lesley Posted December 20, 2009 Author Share Posted December 20, 2009 Thanks for all your good wishes Pieces of the jigsaw are still falling into place and a lot of things re my own health now make more sense. At this stage I have nothing on my GP notes re EDS but I suppose after the next Geneticist appt. then it will be........not sure how I feel about that The best bit for Lauren - which I forgot to add before - is that she had an appt. 2 weeks ago with a physio who specialises in childrens problems and also treats the whole person - we've had so many problems with being referred with each individual injury......by the time the appt. came through she would often have another injury but the physios would only treat the referred injury. She can also have a referral for Hydrotherapy - but as a strong swimmer I feel she will find it 'helpful but boring' I've tried to get her into an Aquafit class that I could take her to but although she's old enough to use the gym (not the best thing for her joints) the Aquafit is classed as one of the fitness classes and she has to be 16 - the instructors are not covered by their insurance to take under 16s - even with a letter of referral. She has to be accompanied when swimming as her shoulder pops out too easily - a lad turning ahead of her kicked it out last time - so I'll have to take her if I can find a quiet 'open to all' time which isn't laned swimming so that we can exercise together. Quote Link to comment Share on other sites More sharing options...
mostin Posted December 20, 2009 Share Posted December 20, 2009 So glad you finally got a diagnosis. It's such a relief when somebody finally gives you the right answer, and believes you . Quote Link to comment Share on other sites More sharing options...
susanbb Posted December 20, 2009 Share Posted December 20, 2009 Bitter sweet in some ways but at least you will know what support and direction you can go in Quote Link to comment Share on other sites More sharing options...
Guest Posted December 21, 2009 Share Posted December 21, 2009 gosh, which joints has she had pop out so far? i've never heard of this, sounds painful, hope now that it's been diagnosed she can get the right follow up treatment! Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 21, 2009 Author Share Posted December 21, 2009 gosh, which joints has she had pop out so far? i've never heard of this, sounds painful, hope now that it's been diagnosed she can get the right follow up treatment! Thumbs at 90 degrees at least half a dozen times, shoulders ( which are multilaterally unstable and sublux which doesn't show on an ordinary X-ray but staff don't like being advised that they need to take a different X-ray = hours in A&E) must be 5 times, knee a couple of times, elbow once then shoulder dislocated when she was getting out of the pool and she landed on the other elbow and broke it, hip joint once, ankles frequently give way, her lower ribs cross and are painful (something I have and now know why) her back is always painful. She doesn't need to be doing anything for these dislocations to happen. She had food intolerances when she was little and that took until she was 5 to sort out as it isn't as obvious as a food allergy. Wheat gave her pains in her legs as well as stomach pains. She seems to be growing out of that. I'm taking her to her first proper 'whole body' physio session this morning. Quote Link to comment Share on other sites More sharing options...
Couperwife Posted December 21, 2009 Share Posted December 21, 2009 wow for someone so young to have so many issues (ive never broken a bone - touch wood let alone having one dislocate ), its a surprise that you ever see her happy and smiling (and ive seen some lovely photos ) I hope that the physio helps, im sure they will be able to offer her advice on different things cathy x Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 21, 2009 Author Share Posted December 21, 2009 Yes, she's always smiley There are many worse things that people have is the way we look at it - and now we can sort out proper management of it all. We've been waiting since May for an OT to come and assess her at school and home. We've let it go a bit as Lauren was moving up to secondary school but we will be pushing for this in the New Year. Quote Link to comment Share on other sites More sharing options...
Couperwife Posted December 21, 2009 Share Posted December 21, 2009 good plan she will probably find that she knows other people at secondary school with the same issues, just make sure that school are fully aware of whats going on, down to the point of being obsessive, it will clear you of anything that happens (school might come out with the "but we didnt know..." ) heres to a positive new year for Lauren cathy x Quote Link to comment Share on other sites More sharing options...
Seagazer Posted December 21, 2009 Share Posted December 21, 2009 Its so interesting what you said about Lauren's ribs being painful as I have loose ligaments and very bendy joints. As a child I used to cry because my ribs were so uncomfortable. Mum took me to the doctors but he just said it was probably growing pains. I wonder if I have this to a lesser extent. Quote Link to comment Share on other sites More sharing options...
Guest Posted December 21, 2009 Share Posted December 21, 2009 poor kid, hope the physio goes well. Quote Link to comment Share on other sites More sharing options...
The Dogmother Posted December 21, 2009 Share Posted December 21, 2009 That's great Lesley, you seemed very relieved when we spoke on Saturday. Sorry I hadn't seen this thread before we met; I lost internet access on Friday evening Send our love to Lauren. Quote Link to comment Share on other sites More sharing options...
Clur Posted December 21, 2009 Share Posted December 21, 2009 Its so interesting what you said about Lauren's ribs being painful as I have loose ligaments and very bendy joints. As a child I used to cry because my ribs were so uncomfortable. Mum took me to the doctors but he just said it was probably growing pains. I wonder if I have this to a lesser extent. Take a look at this http://www.hypermobility.org/beighton.php The Beighton score is one way of diagnosing hypermobility. I score 7 out of 9 and most of my problems throughout childhood, like Lauren, was put down to other things like growing pains etc. I was diagnosed at 21 and am now 35. I don't have as many issues as I used to like joints sublexing (only get it occassionally), but have back problems and my knees remain the main issue. As I said before though, I've not helped myself much as since having kids, the swimming and exercising has gone to pot. Back on it in the New Year as it's starting to affect how active I am with the kids. Quote Link to comment Share on other sites More sharing options...
Seagazer Posted December 21, 2009 Share Posted December 21, 2009 the only thing I can't do is the knee thing! My favorite party trick is to bend my thumb down to my wrist and my fingers back (my DD can also do this). I also click my thumb in and out. Oh! Quote Link to comment Share on other sites More sharing options...
Lewis Posted December 21, 2009 Share Posted December 21, 2009 Glad you have something to say for it, but not that she has it. As others have said, at least the dr's should be able to treat it better and hopefully help her Quote Link to comment Share on other sites More sharing options...
chelsea Posted December 21, 2009 Share Posted December 21, 2009 Goodness, Lauren is a real trooper to come through all this with a smile - brave girl. What a weight off of all your shoulders now you have the diagnosis, I wish Lauren all the best x Quote Link to comment Share on other sites More sharing options...
Charlottechicken Posted December 21, 2009 Share Posted December 21, 2009 Thank goodness you have a firm diagnosis at last Lesley Although it doesn't alter anything with regard to your granddaughter's health, at least knowing the name of the problem helps with so many things. Take a look at this http://www.hypermobility.org/beighton.php That's interesting, I am in no way hypermobile but used to be able to do the first and last of those quite easily, as well as putting my right leg round my neck and doing a handstand with my legs wrapped over my elbows Quote Link to comment Share on other sites More sharing options...
Looney Posted December 21, 2009 Share Posted December 21, 2009 I'm so pleased that Lauren has a diagnosis finally, I know nothing (or rather knew nothing before reading this thread) about this condition and I think Lauren must be an absolute star for coping with it. Fingers crossed that things will improve from this moment on. Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 21, 2009 Author Share Posted December 21, 2009 Its so interesting what you said about Lauren's ribs being painful as I have loose ligaments and very bendy joints. As a child I used to cry because my ribs were so uncomfortable. Mum took me to the doctors but he just said it was probably growing pains. I wonder if I have this to a lesser extent. Take a look at this http://www.hypermobility.org/beighton.php The Beighton score is one way of diagnosing hypermobility. I score 7 out of 9 and most of my problems throughout childhood, like Lauren, was put down to other things like growing pains etc. I was diagnosed at 21 and am now 35. I don't have as many issues as I used to like joints sublexing (only get it occassionally), but have back problems and my knees remain the main issue. As I said before though, I've not helped myself much as since having kids, the swimming and exercising has gone to pot. Back on it in the New Year as it's starting to affect how active I am with the kids. I score 7 as well, Lauren scores 8 but my daughter's score is only 3. It is only one way of diagnosing hypermobility but the EDS part gives other problems as well. My son doesn't have his score yet - we will go to the geneticist in the New Year. When I wrote down a medical family tree it was amazing to see just who has parts of EDS and didn't even know! I put 3 stone on since my last injury laid me up but I can still get my hands flat on the floor! Physio went well for Lauren today - once we managed to get across the icy car park to the hospital without any injuries Quote Link to comment Share on other sites More sharing options...
A chickychickychick-ENN!! Posted December 21, 2009 Share Posted December 21, 2009 Isn't Hellywelly our board expert on that? Maybe drop her a pm? Quote Link to comment Share on other sites More sharing options...
Lesley Posted December 21, 2009 Author Share Posted December 21, 2009 Helly and I have frequent chats about it Quote Link to comment Share on other sites More sharing options...
A chickychickychick-ENN!! Posted December 22, 2009 Share Posted December 22, 2009 Cool! Quote Link to comment Share on other sites More sharing options...
Lesley Posted January 2, 2010 Author Share Posted January 2, 2010 Not a good start to the New Year for Lauren - she dislocated her kneecap last night as she was going to bed and ended up in A&E at Warwick until midnight Her leg is all sttrapped up and she's back on crutches.....a bit of a problem as her shoulder pops out just using crutches. She and Jake were supposed to be staying here tonight but she'll sleep better in her own bed so we've postponed that. Quote Link to comment Share on other sites More sharing options...
Cooks Posted January 2, 2010 Share Posted January 2, 2010 oh my poor love! would the under arm crutches be any better? I am sure they could swap them for her. Quote Link to comment Share on other sites More sharing options...
Lesley Posted January 2, 2010 Author Share Posted January 2, 2010 No, they push her shoulders out as well . She managed to go on a 5 mile cycle ride yesterday and was really pleased to be rid of the arm sling and the thumb splints Quote Link to comment Share on other sites More sharing options...
Cooks Posted January 2, 2010 Share Posted January 2, 2010 bless her heart Quote Link to comment Share on other sites More sharing options...
