Hi Josephine, thank you for your message - sorry I didn't see it until now - I've never used a forum before so I'm not sure exactly how these work - I'm hoping this message will get back to you. We will be heading for our next consultation in a couple of hours' time.
Eva is now 15 (she'll be 16 in July) and her very wonderful consultant is Mr Ed Bache - in whom we have every faith. He has never seen a case quite like Eva's before (but I will be mentioning Jasmine's fairly similar case to him).
I can't place my hands on the paperwork at the moment (it is around somewhere as I used it to complete an EHCP) but it will either be a full femoral reconstruction (he explained that requires breaking the leg in four pieces and resetting it) so that the femur is no longer twisted, or, a hip replacement - I think he is leaning more towards the reconstruction and hoping to delay the hip replacement until her 30s.
I'll outline her medical background below (it's lengthy sorry) but in short, I've watched my daughter robbed of the last three years of her life. She barely sees her friends, her predicted A grades are now 2-3 grades lower as she has 14% school attendance this year. Her education has suffered beyond anything I can explain (she can only manage five hours of school per week on a good week). She had ambitions to be a doctor since age 8.
She cannot join in with any activities that her friends do unless it involves sitting around our house eating take-out once a month. No DoE, no drama productions, no trampolining, running, shopping or even cinema. As she can only sit upright for around 45-60 mins before the pain becomes unbearable and she then has to spend the next six hours lying down to recover.
There are no more day trips out, no holidays. Low quality of life for her as well as rest of family. It has taken it's toll emotionally, physically, financially. I cannot give this up however, I will fight (and have had to fight so many organisations - particularly education). But I just want Eva to have 'some' normal teenage experiences - even if that is just the chance to go to the cinema or shopping with her friends.
Medical background (no childhood problems other than mild bouts of asthma):
11yrs: (July 2012) Fractured metatarsal from swinging accident. A little slow to recover (around four months)
12yrs: (May 2013) Salter-Harris type hairline fracture to ankle. Caused by walking and 'going over' on her ankle. Very slow to heal. Cast removed. Unable to weight-bear/on crutches. Cast replaced/removed (six weeks in total). (Sept 13) Weight bearing but ankle kept swelling. (Oct 13-Feb14) Air-boot used for mobilising. This whole episode took nine months in total to recover (and probably caused SUFE).
April-May 2014: Groin pain started and limp developed. We ignored it thinking it was due to over-compensation from previous ankle fracture.
13 yrs: (Dec 2014) SUFE identified/operated. First 48 hours looked promising. Pain much improved. However, by the end of the week, the pain was increasing and continued to increase. We completed physio by the book and when the pain and mobility seemed to be getting worse, she underwent intensive physio. We worked so, so hard! No one could understand why she was experiencing the pain levels she was and CRPS was mentioned. CAHMS referral made. Rheumatologist (Clive Ryder) involved for second opinion.
(Jan 2016) Eva collapsed in pain and could no longer stand (due to pain). Bedbound until July 2016.
(Feb 2016) SUFE pin/screw removed (to allow MRI) and low level steroid injection (partially diagnostic to see if an increase in pain sign-posted CRPS). The pain very slightly improved however but only for a week.
(May 2016) hip arthroscopy. Showed around 70% surface damage to head of femur (surgeon says it looks like the hip of a 20-25 year old SUFE sufferer). He shaved/reshaped femoral head and fixed labral tears.
(Current Feb 2017) Eva is still in high levels of pain. Can sit up/walk (orthotics) for about an hour but needs most of the day to then recover. I have purchased a fully reclinable orthopaedic chair for day time use otherwise she would spend the day in bed (our sofa is 'too hard' for her).
@Josephine