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Lesley

Diagnosis at last!!

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Thank you :D

 

Well, we have her appointment on 31st August and if they can help her they have a treatment starting 12th September. Its a 3 week residential which she is not impressed about, and even saying it's Bath which is beautiful doesn't sway her as she is not a shopper (unlike her sister). According to the literature they sent, along with two huge questionnaires for us to fill out, they are the only centre who treat teens with her condition in the whole of Europe!

It is going to be really hard, not just the treatment for her, but also being away from home for so long. Hubby works from home which is good, but YD is starting her new school this Sept, so I will miss out on the new term things. Luckily DS's birthday and part will be the week before but I will be away for our 16th Wedding anniversary :cry: I am hoping we will be allowed home for weekends, just so I can do washing and chicken sorting and other bits and bobs. Oh, and see hubby and kids :wink:

I've started writing out lists of what needs doing when, who needs what when. Just so my mind is at rest and I am not stressing about what isn't being done. I can feel the grey hairs spreading even more, just at the thought of the next month or so.

Bria is worried about missing school especially as she will be in year 10 which is the start of her GCSE's, but as it is at the beginning of term and the new year, I am sure school with be understanding. Especially if it means she is walking again *dances* or is just able to get up the stairs for her art classes as that is the only lesson they can't move downstairs for her - all the rest they have.

Just got to get her in the right frame of mind so she will accept their help. She wasn't too positive last night about it :anxious:

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I do hope Bria soon accepts that it will be for the best.......not easy when it means missing the beginning of school. Lauren wasn't too impressed at having to spend 3 weeks at GOSH as you know, but it did help.

 

Could your OH join you for your wedding anniversary?

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My son has hypermobile joints - but nowhere near as bad the the people on this thread! My daughter also has it and she is now 20. She gets a lot of pain from her hips and legs and fingers, she is in her 3rd year at uni and sometimes has to munch on painkillers like smarties! But she has done well and is loving her course.

After many years battling for support, my son is now at an excellent school. The rounds of doctors therapists etc was mentally exhausting for everyone, but he is in a good place now and is happy for the first time at school, he will be 12 in a few days time.

It is genetic and in my case it come form my ex's side of the family.

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Oh! and I really think you need to get Lauren statemented. It made all the difference for my son, before that he was the boy in class who was bright but got nowhere! Now he is flying! Then again it's hard to do any kind of schoolwork when you can't grip a pencil and any subsequent writing looks like a 3 year olds! That's without all the missed days because of hospital appointments!

His primary school just did not "get" him at all and had him marked down as lazy at first. He was useless at sports, which improved when he got fitted with his orthotics for his shoes! He'll never be Usain Bolt - but he tries!

But do you know what was a lifesaver for him? CHICKENS!!! which is why we are all here! (Many thanks to the lovely OLLY - from whom we purchased our EGLU).

He goes to a small speacial school now which has only 67 pupils, three quarters of whom have Aspegers. Incidentally, Hypermobility and Dyspraxia often also go with Aspergers - and he is one of many in his school like him. He is no longer the odd one out. I just knew a mainstream school wasn't right for him, the stairs, the noise, the crowds, not to mention the smells! He is super sensitive to sound and smells - and hated the ones we visited.

 

Lauren is lucky to be surrounded by such a wonderful supportive family! :clap:

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:D I'm always delighted to see your posts, Louise, because I well remember the day you came to collect the Eglu, and how excited your son was! I'm really pleased that his delight in the chickens didn't wear off, and that you are all still enjoying them as much as ever. Glad to hear you've managed to get your son into a new school, sounds as if it was what he needed.
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Olly - the novelty never wears off! I love opening their door in the morning and have them rush out for a chat! They have been helping me clear the beds in the garden today - the very beds they have been kept out of all summer! They were sooooo happy that It just makes me smile thinking of it! They went to bed with full crops - I swear they were smiling!

Harry still remembers the day we visited you - the only thing he was dissapointed about was that we didn't bring any chickens home with us! We had to wait to the following sunday to go and get them!

Lucy can't wait to get her own place - the only criteria being that there is a garden with room for some chickens! When she visits (she's at Uni) - she goes straight through to the garden to see "her" chicken (Chirp).

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Nice to hear from you Louise - and lovely to hear that your son has been helped by having hens :D

 

My daughter and SiL didn't go down the statementing route as Lauren hasn't been in mainstream school for almost 2 years now. my daughter had a very productive meeting with the school she's still registered with last week and an agreement has been reached re Lauren having Science and Art lessons in school so the school suggested statementing as she will then be able to get the help she needs and so will the school (?)

 

That's been the only high point for a couple of weeks though - Carl and I had a week away and when we returned on the Saturday Lauren's back had gone again and her legs were numb but not paralysed - on Saturday night her thumb was double dislocated and would not stay in so we spent most of Sunday in A&E and the plaster room but even a plaster cast would not keep it in and had to be cut off. Fracture Clinic on the Monday when the consultant insisted on an X Ray despite us saying that Lauren hadn't had one for a year and they'd been stopped because she'd had so many. Another cast was put on while the Consultant applied traction - my daughter had explained that the heavy casts will dislocate her shoulders......her shoulder popped out while we were leaving the hospital and my daughter had to put it back in........and then later that night the thumb came out within the plaster cast - practically impossible according to the consultant :roll:

 

Tuesday, I didn't go to the hospital so my son went with them. He phoned me to say there was a problem so I went back over. The consultant had called in a colleague to help with a decision over whether to operate or relocate under a GA. Consultant 2 would on;ly speak to Lauren and wouldn't let my daughter speak at all, he barked questions at her about previous times she'd dislocated her thumb, asked her why she wasn't at school and then announced that he thought she was dislocating joints herself, was attention seeking and dragging her family around the country, followed by "and with the number of X Rays you've had, you'll probably get cancer" !! :shock:

 

Lauren and my daughter were in bits but by the time I arrived the nursing staff had noticed and had had a chat with them both. The nursing staff were as appalled as we were and an official complaint has now been made.

 

On Wednesday Lauren had her thumb relocated under a GA and (without any discussion with us) a very heavy duty plaster cast was put on :roll: Her thumb has stayed in for a week now but her shoulder keeps popping out :roll: Physio don't like joints to be immobilised.......orthopaedics do like them to be immobilised :roll: We daren't even tell them that a Chiropractor has sorted Lauren's back problem out :roll:

 

Lauren and I both have the same problems with our backs at the moment - in exactly the same area and causing the same problems! The chiropractor has sorted us both out.

 

Lauren's reports from Interhigh are very good and she's doing really well - I wish some of the health professionals who are obsessed with her attending a mainstream school would take the time to look at it all.

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OMG....I would be so angry - I would not rest until that consultant was punished! He obviously knows nothing about the condition - how dare he act like that! You have worked so hard to get this far only to have an "Ooops, word censored!"h@le like that imply that it is all a sham and is made up! So if that's the case - you must all be doing it!

 

Don't let it drop - if nothing else - he will learnt to treat patients with respect - surely her notes must clearly say what the problem is - or did he not bother to look at them?

 

I hope you sort things out!

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About statementing.........once statemented - the school will recieve extra funding - BUT be warned!!!! It goes into a pot in secondary schools and is NOT ring fenced for Lauren.

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