My daughter has just been diagnosed with SUFE/SCFE.

Posted , 10 users are following.

Hi to all, We just found out 1st Feb that my daughter has SUFE. I am almost speechless at this situation. I will admit while speaking to the specialist I was completely done in. I think shock took over and that was that. He talked about 2 types of operation and all I can remember is the small one and the big one. We couldn't make any sort of decision right there and then. I told him we will have to come home and do some research on this subject and will confirm by friday what we are going to do. We have talked about it and she will have the big one which means bigger cut. You may think my gosh she doesn't even know terminology, but hearing this news and seeming to be not very nice outcomes, with more problems or worse. IT WAS SO SHOCKING. I will be finding out exactly what the op entails. She is having the MRI scan next week. Anyway I am prob waffling and I'm trying to keep a brave face on for my baby, trying to be positive but then I go into think think think mode and feel like OH MY GOSH. Any help, advice from anyone would be fantastic.

0 likes, 20 replies

Report / Delete

20 Replies

Next
  • Posted

    hi, im so sorry to hear about your daughter, its shocking when it happens i know my son was 12 when it happened to him and you cant believe it as id never heard of the condition let alone make any decision on what to do, as you are tooo busy trying to take it all in,

    my son had to have to pins put in either side of his femur to stable him, then when it was all going fine he had to have another operation the re-posistion the pins.

    if that wasnt bad enough he then was told he now has developed navascular necrosis where the bone is dying ! so i now spend most nights on here trying to research,

    i know you must feel as helpless, but it helps on here to realise your not alone !

    i hope it all goes well for your daughter.

    shell :

    Report / Delete Reply
  • Posted

    sorry to hear about both u children my son sufe happened back in 2005

    he is getting new hip soon at 18 we been through hell and back just watch for change in attitude and depression been there he is now at college and doing well but in pain all time ,i hope you are luckier be posative i hope you have a good support network and good consultant do not be worried about taking them to a and e if in pain good luck to both of them

    Report / Delete Reply
  • Posted

    hi thank you, im so sorry your son is in pain most times i hope he gets his replacement soon!

    its hard to understand sometimes why this happens to you, but its amazing how often this has happened to everyone, as when it happens to you your told this is unusual and you ealk away thinking why me!

    how has your son and you coped with this?

    as im trying to support mine through this and resarching as much as i can.

    hope to hear from you soon

    chell x

    Report / Delete Reply
  • Posted

    chell, we are coping now but there have been times that the world seemed

    a very dark place my husband didnt cope we split up last year after 34 years ,i fell ill back in 2007 in int care for 10 days pleurasy and double pneumonia there was no bacteria in my system the consultant put it down to STRESS so lesson to be learnt i am now much more relaxed and jordan has made it easier by not letting it stop him doing what he wants not always that way in2008 he put his head through a window because he had enough luckly he only split his nose open it could been so much worse

    that seemed to be his turning point so please please watch u children if they become quite and withdrawn i was asked why he never had counciling for a life changing injury he was never offered it in fact our local hospital put him in wheelchair and gave up

    Report / Delete Reply
  • Posted

    Hello to all, me and Jacqui have been communicating on this site for a while. Like Jacqui, my son is waiting for a complete hip replacement as he has developed avascular Nescerosis of due to having 2 pins inserted in Sept 2008 to correct his SUFE. His condition went undiagnosed for around 8 months, we were told it was growing pains then an orthopedic surgeon diagnosed him within minutes of meeting him and got him into hospital on the same day. He spent nearly 5 weeks in hospital.

    It's seems such a long time since he was a happy boy, walking normally and it is so upsetting to see your child go through this, you feel angry and helpless but you have to try and be strong too. He is not down all the time but he has lost a big part of his childhood and he doesn't go out with friends as he is ashamed to be on crutches. He gets nasty comments from some people at school but he can look after himself but it does upset him.

    Anyone wants a chat/support let me know, it's good to talk as they say. X

    Report / Delete Reply
  • Posted

    hi all mjane i spoke to hospital last week they are fully booked up through march so at least we know jordan can have his 18th birthday party then out clubbing with both his sisters and their husband/partners he has promised to be carefull cant say im not worried but i know he will be looked after just glad he doing normal things for his age hope mason ok

    we have my youngest daughters wedding in june and jordan is an usher

    so hope all over by then

    sorry hope you are well

    Report / Delete Reply
  • Posted

    Hi everyone, so sad to hear your stories, I came on here to see if I could find out more about this as my

    daughter is going for an xray tomorrow, doctors have said she may be suffering from this 2, could someone please tell me what was the 1st symptoms and did an xray pick this up or was it the ct scan

    Thanx in advance xx

    Report / Delete Reply
  • Posted

    Please make sure they do all available tests and X-rays. My symptoms wre pain in front of femur and non weight bearing yet they didn't X-ray me. Let us know how you get on.

    Report / Delete Reply
  • Posted

    Hi thanx for your comment. I've never heard of this till today when I took my daughter who's 10 to the doctors. She has been complaining of pain in her groin area and her knee both on the right side and I put it down to growin pains at first but it has been going on for weeks now so I decided it was time to get her checked. So worrying tho as av been told I'll not get result of X-ray for about a week.

    Marie x

    Report / Delete Reply
  • Posted

    I have only found this peg today myself however my story is on the board. What symptoms does she have?
    Report / Delete Reply
  • Posted

    I've wrote symptoms above but she has pain in her right side groin area and In her right knee, although she can weight bare. She complains its worse when walking and even worse still when running x
    Report / Delete Reply
  • Posted

    I

    would ask her to take it easy until results are shown. Will you not see consultant at same time as X-ray?

    Report / Delete Reply
  • Posted

    No!! She'll get the xray and then results will be sent back to gp, I was told to phone for results in about a week, I feel it's a long time to wait after reading everyones stories on here, I will be making sure she takes it easy x
    Report / Delete Reply
  • Posted

    Hi. My daughter who is 9 years old has just been diagnosed with SCFE. Her surgery is booked for Monday, 2 days. After reading and reasearching and listening to others through various posts I don't know if this is the best thing. My predicament is, is this really the best option. If anyone can help shed some light on this it would greatly be apprecaited. I'll share with you my dilemma.

    If she gets this surgery done, her right leg, then her leg will stop growing within approx 18 months. That gives her other leg approx 3 more years of growth. Meaning she will have one leg shorter than the other. Another option, although not given by my surgeon is to get both hips done at the same time, which will prevent, if it was going to happen, any slipping, and also have that leg stop growing at the same time, which would mean both her legs would stop growing at age 11 years. Or alternatively, like for Perthe's disease and hip displacia, I have seen other treatments, normally for younger patients, non surgical treatments, which would mean both legs would still continue to grow.That would require my daughter to be in either a sica cast for a long period of time or to wear braces to hold the hips in place, also for a long period of time. This seemed to be something they did pre surgery times. I know this would be nightmarish for both my daughter and our family but 5 years of casts and braces vs a short leg or stopping the growth process compared also the rest of her approx 70 80 years of life left.

    Has anyone had direct experience with this situation? Could anyone shed some light on what decision you would make if placed in this situation again or being able to turn back time. Any feedback would be greatly appreciated.

    Report / Delete Reply
  • Posted

    hi DonnaR

    i have joined this forum just now, facing the same predicament you had last year. i hope surgery for your daughter was good and she is getting back to normalcy.

    we are from botswana in africa and Infact we have had this situation for some time now. my 10 year old daughter was diagnosed with scfe last year sep. she complained for mild pain and a limp. the doc asked us to give complete rest to her (crutches and wheelchair) and come for surgery (pinning) at the earliest. in less than 10 days she was almost fine with no limp and pain. doctors were surprised coz the xrays still show that there is scfe, though mild. since that time in oct last year to now she is complaining of mild pain once in a while (like after 3-4 days, frequency is not increasing ) and there is still no limp at all. doctors are still advising we must go for pinning but we are taking alternative (herbal) medicines to strengthen the bones and she is doing swimming for 30min regularly under supervision. no other school activities except plain walking.

    we really not sure if we are doing the right thing but keeping our fingers crossed that her condition stays mild till the time the epiphysis closes, thats another 3-4 years. we are not comfortable with idea of pinning coz that also has high probability of complications post surgery.

    anybody reading this please share your experience and thoughts with me. will be immensely grateful. thanks

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up