My name is Joanna Kindred i am 13 years old,I had SUFE d...

Hi all,

It has been so long since I have used this website. An quick update on Tasmine. She went to Wales on her school trip and walked around Snowdon for about 3 hours!! The teachers we so proud of her. This was at the end of May and since then is progressing leaps and bounds. Tasmine is still having weekly physio and from next week will be taking part in a lower limb exercise class at our hospital to strengthen her hip further. Our next outpatients at RNOH is not until 22/8 when hopefully Tasmine will be given the all clear to return to sport. Until then she has started back squad swimming weekly which she loves and runs about with her friends like 'normal' kids. Tasmine SATS for Key Stage 2 were amazing (two 5's and one 4). I thought with her having so much time off school that these might suffer. She has proved her Dad and I so wrong. Today (22/7/05) is her last day at Primary School. She is so excited about staring Secondary School in September. I just hope she can take part in all the sports offered there.

Colette, Joanna, Jan, Heather and everyone else I am so glad that we are all recovering from SUFE. It is so nice to talk with you all and to share our experiences. It must be a girl thing!!!! Take care all of you and enjoy the Summer Holidays.

Sam & Tasmine Castle XXXX

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Hi claire,

My dancing show was on at the New empire theatre in Southend-on-sea. It finshed yesterday night, im so glad i was in it. All my family came to watch me which made me fill lots better. Where abouts do you live?, because i would love to meet you. ( And love to see one of your shows.)

Take care jo.x

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Hi everyone, how you all doing? I'm glad to say that i'm filing alot better in myself ,and on thursday friday and saturday i was in a dancing show. It made me fill like i really achevied something over this very tuff last year in my life. I mist out on the last show because i was in hospitial. I fill at the moment that my life is finally getting so much better. jo.x

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Hya Jo (and everyone) !

Congratulations on your dance show - im sure you were amazing !!!!!!

I live in Nottinghamshire but would love to meet up too ! Would be great to share some dance pictures !

Your mum must have been really proud watching you dance !

Im glad things are you going well for you !

I have my Theatre Craft advanced performers exam coming up next month and am trying so hard to perfect a sitting attitude !!

My GP referred me back to the hospital last week as my hip seems to be having a really bad week - which im not looking forward too.

I hope things are going well for everyone

Claire

xx

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Hi everyone!

Sorry its been along time, how you all feeling? Tasmine hope everthing at school is going well, im glad to tell you that i am going dancing 4 times a week and also doing P.E twice a week and have to say i have not had any pain for along time. I have really found that doing more exercise has helped alot with keeping good mobility in my hips. The only thing my mum is worried about is if i over do it and am doing it to much, but you have to no your limits and no when enough is enough. I still get the daily questions from my mum like is your hips hurting, your knees,your back. But i am very happy to tell her no. I am being a bridesmaid on 8th October and am really looking foward to it, as last time i was a bridesmaid i had a limp. I cant thank all of you enough for helping me threw all this , i hope i can return the faver. Take care and listen to your body. love from Joanna:D

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Hi everyone, I am 13 and have SUFE i had been to the doctors so many times with a limp and knee pain and the doctors said it was just growing pains, i had been going to the doctors for 2 years with these symptoms and had loads of blood tests but obviously they couldnt find anything wrong.None of them had the common sense to send me for an xray. When i was doing my school pantomime i had a main part.Then a few minutes before my performance i was ll dressed up in my scarecrow from the wizard of oz costume and then i collapsed. I couldnt walk and had to do the performance in a wheelchair. My dad had to carry me into my house and when the paramedics arrived they didnt know what was wrong. A few weeks earlier i had researched on the net and found a few of my symptoms met with the sufe symtoms and i was convinced it was what i had. i was in hospital for 3 weeks and i had my opertaion cancelled 3 times - one because the surgeon got sick for the first time in 8 years. I have had a pin put in one of my hips to stabilize it but now 1 year and 2 months on i still walk with crutches because of the severity of my slips in both legs. I walk on my toes because it compensates with my limp and everyone bullies me at school. They kick my crutches from underneath me. I have to have 2 osteotomies but thank god not at the same time. i am really scared and wish that i had somebody who knew how i felt bcause all my friends think i exxagerate my pain. But one good thing has came out of all this... I have decided to be a surgeon when im older so i wont be as grumpy as the surgeons i have met. love stacey. xx

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Hi Stacey, So sorry to read about your problems. Its hard trying to explain to anyone just how you feel and how much pain you are in with sufe, because people just dont understand. I cant belive that children could be so cruel as to kick your crutches away from you, dont they understand, that you are not using them for the fun of it!! It sounds terrible but it would serve them right if they had to go through half of what you have and then they would perhaps understand. People can be very cruel and unkind. Colette was in a wheel chair for a little while just so that we could get her out and about after her operation and people would just stand in your way and not try to help with doors etc. It really opens your eyes. Hope that you get rid of the crutches real soon and can walk unaided. Dont be afraid, Colette said he felt strange at first but then there was no stopping her. We go back to Alder Hey in June just for a check up but Colette hasnt had any problems so everything should be ok. Dont know if they will keep her on a 12month review or not but here's hoping we dont have to go back - ever! Take care, keep your chin up and your spirits high

Love from Heather and Colette x

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Just thought we would give everyone a quick update. Colette has been back to Aldery Hey today for a 12month check up and they were so very very pleased with her. They have confirmed now that the hip bones are fusing together and that they WONT now slip out again!! Thats such good news we are so pleased. Colette has to go back again in 12 months by which time the bones should be fully fused. All the patience and doing exactly what she should have finally paid off for Colette. WELL DONT HER WE SAY and Im sure you will all agree.

Good luck and best wishes to EVERYONE on this site hope you all achieve what Colette has

take care

luv Heather and Colette xxxxxxxxx:wink:

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Hey Heather and Colette,

I just thought to check for any replies, and saw your reply. Im glad Colette is on the mend! I am too, I had a femoral osteotomy on June 26th 2006, and they gave me an epidural, It was very horrible, and my leg felt so strange being straight again! It feels really heavy, and Im having physiotherapy at the minute. Im going for physio tomorrow. Ive had a few check ups since the last operation, and alll is going well. They had a small complication in surgery, whre first of all, they had already gave me the anaesthetic, and the screws and metal rod got delivered to the wrong hospital, and then they made a small nip in my femoral artery and had to resuscitate me. It was all very scary, but noone thought to tell me until after I was out of hospital. Im on the mend, and I was supposed to be partial eight baring for 6 weeks, but started walking gradual steps after just 4 weeks although I did get a stern ticking off from the surgeon :D the other day, I attemptted riding a bike, and can kind of do it! although I grazed my shin in the process. I can walk a little way without my crutches now, and still need them for school. I feel special to have to go through SUFE, because I wouldnt be me without it. We are all a rare species you know! I went swimming on holiday for the first time in years! I really enjoyed myself, although my leg sunk to the bottom. I got another letter a few weeks ago, the diagnoses was:

Bilateral Capsular slipped upper femoral epiphysis with recent left femoral tri plane osteotomy! What a mouthful! I hope everybodys doing well and achieving all I am achieving, Im so proud of you all! x x x x Stacey :lol::D:shock::roll::cheers::cheers::ok::magic::yikes:

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Hi Joanna, I know that your post is quite old now, but I wondered how you were getting on with your hip?  I notice in your post that you say you were in quite a lot of pain.  My son had a SUFE 3 years ago and is still on crutches.  We are going to seek a second opinion from Royal National Orthopaedic Hospital hopefully to decide on the next treatment, and notice that this is where you had your treatment?  Are you on facebook?  We have a facebook page called SUFE Sliipped Upper Femoral (Capital) Epiphysis, it would be great if you could join and let us know how you are getting along. Regards, Ruth