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Perthes/SCFE

Posted , 3 users are following.

rugbymum
rugbymum

hi my son is 13 years old..he had perthes diagnosed when he was 3 hospital just kept eye on him 2 years ago he was in pain but the limp had gone just gave crutches and rest..been no probs since hes been playing rugby for 4 years ..2 week ago he was in a game and suddendly fell was in lots of pain got him to his feet but hes in pain limping struggling with stairs etc...same signs as the perthes..anyhow doc sent him for xray doc has said no sighn of perthes in right hip (the one now causing pain) but still present in left??? got a letter today saying it could be SUFE but the xray not a good view so he needs go docs get an urgert referral...but our hospital has no Peadratician ortho clinics till end on April ??? im concerned he may be doing more damage limping about etc..hes been on ibuprofen and paracetamol for 2 weeks..still in lot of pain?????

0 likes, 10 replies

10 Replies

  • trolly-dolly747
    trolly-dolly747 rugbymum

    Posted

    Sorry to hear of your son's problems. If they think it is a SUFE he should not be walking on it! My son did and now 2 1/2 years later he is still on crutches, and nothing can be done until he is aged about 17 and he faces disability for life. Where abouts are you in the UK? There are a couple of Facebook forums - SUFE Slipped Upper Femoral Epiphysis and my name is Ruth so if u want to ask more questions on the Facebook pages that is fine - but DO NOT let him walk on it, the consequences are devastating.
  • rugbymum
    rugbymum

    Posted

    Oh my...i will go onto facebook join the forms we are in warrington cheshire did you go through A&E or wait for the appointment come thro?? your son must be devastated ...
    • kelly44634
      kelly44634 rugbymum

      Posted

      Hi can I please speak with you. My son is 15 and in September had a severe side I was told on Friday that the blood supply had cut off and his ball is crumbling  I was left in a state of shock and very confused I really would like to speak to some one who can give me advice. 
    • trolly-dolly747
      trolly-dolly747 kelly44634

      Posted

      Hi Kelly, if you are on Facebook, then please join our facebook group SUFE Slipped Upper Femoral (Capital) Epiphysis, and I can message you, or charity STEPS UK, if you ring or e-mail them, ask STEPS to contact Ruth and it is about a SUFE, leave your number and I'll call you back.  Regards Ruth
  • trolly-dolly747
    trolly-dolly747 rugbymum

    Posted

    Unfortunately we went to our GP, who did not refer us for an X-ray -it should be treated as an emergency, and referral to Paediatric Orthopaedic consultant, and until X-ray rules out a SUFE, the child MUST NOT walk on the leg.  Walking on it makes it worse.  In my son's case it was so severe that all the blood vessels had been cut off to the femoral head, and when there is no blood supply, the bone dies and you are left without a femoral head (the ball part at the top of the femur) - it is like an ice cream slipping off a cone, and the more the ice cream slips off the cone, then the harder it is to fix.  My son was under a consultant at North Staffs University Hospital, and he turns out to be one of the best.  We live south of Birmingham, but were on holiday when it happened.  But we have still stayed with the consultant.  North Staffs is excellent, some very good orthopaeds there.  If there is nothing in Cheshire I would drive to North Staffs and just turn up at A & E.  Hope this helps, but please don't allow him to do any walking, sport, just nothing, go to A&E tonight or tomorrow morning.
  • trolly-dolly747
    trolly-dolly747 rugbymum

    Posted

    How did you get on?  Did you go to another hospital?  Hope that all is ok with your son.
    • rugbymum
      rugbymum trolly-dolly747

      Posted

      Hi my son is still the same I've been on to our hospital they have told me it be 9 week before an appointment for him...he's not in pain when not walking so I'm either taking him back to GP or driving to Alder Hey children's hospital xx
    • trolly-dolly747
      trolly-dolly747 rugbymum

      Posted

      Hi,  same with my son, the pain is usually on weight bearing, as the pain transfers from the hip down the leg to the thigh/knee as they put their weight on the hip for walking etc.  My son was fine in the swimming pool and sitting down etc, until it finally gave way.  The problem is with the walking, this aggravates the problem, until the hip becomes completely unstable.  If you have Alder Hey as an option, I would go there.  I can't emphasise enough, that it is not worth the risk of waiting - if it turns out to be something else fine, but the damaged caused is irreversible, my son and other children like us face a lifetime of wheelchair use, it has ruined his childhood, and I've just met another Mum, whose  waited 3 months before being seen, and her daughter's childhood has also been ruined - let alone the cost of caring for the child etc, no hope of a hip replacement until they stop growing, and then only 2 or 3 hip replacements in a lifetime, and then what? at the age of 40 in a wheelchair.  I hope I don't sound dramatic, but this is the reality that we have been left with, and I only wish that someone had told me the consequences of delaying the visit to see the Orthopaedic Paediatrics.  If you google complications of SUFE/Avascular Necrosis, then this is an interesting read.  Also NICE guidelines for GP's on treating children with hip disorders/SUFE - print this off and take to your GP.  Wishing you well, what ever you decide to do.  Do let us knowxx
    • rugbymum
      rugbymum trolly-dolly747

      Posted

      hiya  i went back to Gp on Monday she was unaware that no ortho consultant at warrington hospital for 9 weeks its been 3 weeks now.. anyhow she written to Alder  Hey so im just waiting to hear off them..i dont think your being over dramatic i think sometime some NHS staff dont realise what its like when its your child..if they were going through it im sure it would be different!! will keep you informed thank you ive been in hospitalmyself this week due to DKA im type 1 diabetic..so added worry doesnt help..
    • trolly-dolly747
      trolly-dolly747 rugbymum

      Posted

      Sorry to hear that you've been in hospital also. The stress is probably affecting you. Why doesn't the GP realise how serious this is, and sent your child in for an urgent referral? - it is so frustrating that they don't take these things seriously, I do hope that you have a swift response from Alder Hay, and that your GP has told them it is a suspected SUFE. Anyway, do follow up with a phone call to the consultant if you do not receive a quick response and keep us posted. X
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