My 12 year old son was diagnosed with SUFE in Jan 2016, He had both hips pinned on 1st March 2016. He was walking unaided 2 hours after the operation and told to bear all his weight on his hips straight away, he was home the same day and had hardly any pain. Now 2 months on he is still pain free but cannot do any sports for 6 months while he heals.
I have looked on this forum and seen that some kids are in hospital for months and are on crutches for months after their operation?? I'm really confused as my son was walking 2 hours after his operation which I feel is totally amazing compaired to some of the stories on here.
my question is why has my son been told to walk straight away yet some kids are told not to for months ?
He never used his crutches after his op and has been told not to, he has check ups and is told to continue doing nothing but walking.
The stories on here are making me think he is very lucky but his surgeon said this was normal. He never stayed in hospital it was day surgery but on here kids are in hospital for weeks? I'm very confused if anyone could help me understand I would be very grateful. Thanks
Hi Gerry
Sorry to hear about your son and having to have both hips pinned.
Did he have SUFE in just one hip, but they decided to pin both anyway?
There are varying degrees of SUFE, depending upon when it is diagnosed. In a child who has had a very bad SUFE, and the blood vessels to the femoral head have been compromised, and Avascular Necrosis is evident, then weight bearing would severely effect the femoral head and cause it to completely collapse , and it would then be completely unusable until the child was old enough to have a hip replacement.
In a child who has had a very mild SUFE then the chances of the blood supply being compromised are lower, and therefore weight can be put through the leg much quicker after the pinning.
I am speaking as the parent of a child with a very severe SUFE, whereby he has Avascular Necrosis, it takes a few year's for the hip to heal - hence the non weight bearing and use of crutches. Also, the femoral head can still end up mis-shaped and therefore the child is unable to use the hip/leg for walking. After the child has been on crutches for so long, walking then becomes difficult, as the muscles used for walking are weak. I do know from speaking with my son's Consultant, and another child who was in hospital at the same time as mine, that even a child who has a mild SUFE, and has been pinned, that they are non weight bearing for around 6 weeks, to allow the hip to heal and the pins to settle presumably.
So, don't know why your child has been allowed to walk and weight bear on both legs seems very odd. If it was my child, I would seek a second opinion from a Consultant at an Orthopaedic Hospital, who specialises in SUFE. Although if your child has been walking on the leg for 2 months, then any damage now would have probably been done.
Which country do you live?
Regards
My son had both hips pinned, they were not bad only just slipping lucky it was caught in time after over a year of doctors telling me it was growing pains??? I just hope him walking so soon is a good thing not a bad thing ! One hip was worse than the other but I decid to have them both done as it was a 30% chance the other one would slip more after the first one being done, he was meant to stay over night but he was up and walking after 2 hours so I thought best to have him at home with me where I could care for him 24/7. I'm in London , England so maybe things are different in different countries?
I have his 3 month follow up in June and I will hopefully be seeing his surgeon as the appointments we have had so far have been with the consultant team, they have been useless!! I have demanded that I see a surgeon this time.
I'm just shocked but the difference in treatment, my son seems to be the only one in this forum that was up in 2 hours after surgery?? Not sure if I should be worried ?? Or maybe I was very lucky and caught it before it was very serious ?
Thank you for your reply
Hi Gerry
Sorry to hear about your treatment, we are also in the UK near Birmingham, and have had excellent care through the Royal Orthopaedic Hospital where they have consultants who specialise in SUFE. If you check out facebook page SUFE Slipped Upper Femoral (Capital) Epiphysis and send in a friend request then please carry on asking more questions there.
Kind regards
Hi like below has said various degrees my son is at the worst end , total slip pinned twice avascular necrosis in wheelchair for 6 years new hip at 18 pain free for last 6 years until today we have been in A&E all afternoon now need to go back to royal national orthapeadic hospital Stanmore . I hope your son carries on doing well . It is fourteen years since it happened but obviously not over for our son . Good luck for future .
Hi Jaqs
Sorry to hear about your son, we are only 2 yrs 9 months into crutches/wheelchair until a possible operation in Switzerland this year, to re-shape femoral head and triple pelvic osteotomy or he remains in wheelchair until he is 18 - same as your son, at the worst end of the scale. You mentioned that it is 14 years since it happened to your son, so he's had his hip replacement has he? I just wondered if he is having problems with the replacement? Would you be interested in joining our facebook page? SUFE Slipped Upper Femoral (Capital) Epiphysis. Kind regards
It's seems my son is very lucky, hope it's nothing serious with your son. I am so happy and thankful that my son is on the road to recovery and that he continues to get stronger every day. It's very early days for us and it seems you and many others have had a very bad time with the development of avascular necrosis, it was discussed with us before surgery but we were told it was a very 'low chance' of this happening and that he had more chance on a total slip in both hips than for this to happen , wishing your son well and all the luck.
Hi yes a new hip at 18 years and until last Saturday all was fine no pain walking fine but now we need to go back to Stanmore because of sudden onset of pain across both hips and both thighs
Oh dear, so sorry to hear this, I do hope that you get to the root of the problem soon. Please do keep me informed and join the facebook page SUFE Slipped Upper Femoral (Capital) Epiphysis or there is a children's charity called STEPS and my details are with them. It is such a terrible thing to have happen to our children, and any information that can be shared may be helpful to this small community of sufferers and their families.
Dear Gerry.
i hope all is going well with you and your son. We have had a similar experience but only in relation to one hip. After my sons operation he was walking to the toilet the same pm although using crutches. Although he was instructed to use crutches it was a battle to get hime to use them.. It is just over a year now since the operation and you would never know it happened. no side effects whatso ever. We have had a few SUFE s in the rugby club recently and all are a similar storey. just a thought for the future ........ i have recently employed a specialist running coach to try and get my sons running technique sorted not just because of the operation but because he is particulary tall.
best of luck.
Hi there
This is wonderful that your GP recognised the symptoms and referred you to the hospital straight away. If you've had a few SUFE's in your Rugby club, then parents and coaches are hopefully well aware of the symptoms and know to have it treated asap. The long term issues which occur are down to the children not being referred soon enough, and once the damage done, it is irrepairable.
TBH actually the GP had a fair idea but the Xray took weeks to come back. it was sheer luck that as a senior professionally licensed rugby coach i stood him down from full contact rugby till i was sure. Accordingly the profile of kids that are most likely to get this is "large" kids, male, going through a growth spurt and puberty and also probably of particular ethnic backgrounds...so rugby is right in the front line here.
Mmm, that is interesting, another lady has been in touch with me through our SUFE facebook page. Her 15 year old son was a rugby player and his SUFE was undiagnosed, after only 2 weeks, his SUFE went to a chronic state, so he is in the same boat as my son - crutches until a hip replacement at 18. I wonder if some awareness of the condition could be promoted with rugby/sports coaches (if not already done so) - whilst I realise it is not in their re-mit as a coach, It would be great to increase the awareness of this chronic condition to as many sporting professionals as possible, to try and avoid such a disastrous outcome in young children (mine was only 10). Let me know what you think. All the best.
Awareness is not promoted via the RFU. i believe it is worth approaching them. Bear in mind the RFU also run sports Physio qualifications and courses. The RFU has been very active in recent times with thier concussion awareness courses so there is some precedent here. I have just had a rummage to try and locate a contact for you but no luck. probably best to search through the RFU Rugby England website..goodluck.
Hi
This is really interesting as my son had just started playing rugby at school .
. Jacqui
i believe IF there is a relationship between a SUFE and rugby it is not the nature of the sport but rather rugby attracts larger kids who are more susceptable. The kids in rugby that i know who have had this are on the extreme edge of what there skeletal frame can handle . They have all had growth forecasts of 6ft 8 plus and been heavy. Not all rugby players get this at all. Indeed many kids get this who dont play rugby. But the larger kids at the edge of extreme skeletal growth who are also going through puberty and a growth spurt are more susceptable. To turn this on its head. If i had not been a rugby coach and working within this enviroment i may have encouraged my son to play sport and his hip may of totally collapsed.
b
Hi, totally agree with you on this, I don't think (nor do the experts) that there is anything to do with sports/Rugby, but it has something to do with the build of the child and their stage of puberty/growth spurt. But also, this can happen to tall/skinny boys, as well as girls, but boys seem to be more prone to the condition than girls. As I say, if more sports coaches were given some advice on this, (as GP's are still failing many kids when it comes to recognising the symptoms), then it would save the handful per year which fall through the net.
Many thanks, have just seen your reply - will think on this.
i sometines think that its possible to screen kids at an early age by undertaking a growth forecast and looking for extreme growth or looking for kids over say 95% growth centile .... just a thought from a layman.
b
I myself think as in case of say meningitis we should be given warning signs ie knee hip thigh pain my son had a growth spurt but was also very large shoulders at 13 we were buying 40-42 inch chest for him butwas not overweight. Had we known the signs my son would not have lost teenage years in a wheelchair I do get angry and now may be other hi going