Hip perthes disease, any experience?

[hawkmcqueen]

Hi there, my son has been referred to a consultant for expected perthes disease based on a recent x ray and limping etc for past 4 months. He is 4.5 years. Does anyone have experience of perthes and what was the outcome? Many thanks.

[Willdoitinaminute]

A friends Ds was diagnosed with Perthes at 11yrs old. After prolonged treatment he made a full recovery. He rowed and played most sports in his teens and twenties. So far he has had no problems.

[hawkmcqueen]

Thanks for that willdo, I have been googling and there seems to be such a wide range of outcomes. It is heartbreaking to watch him limping around and thinking he won't be able to do team sports etc. So that is warming to hear :-)

[hawkmcqueen]

Hi there I am bumping - anyone???

[moojie]

My DH had perthes some 25 years ago that was picked up late so he had quite a severe case. He has had 3 hip operations, one at the time, one at 18 and one at 28. DH was a very sporty child and it has not stopped him one bit. Still played county level rugby (much to his consultants horror) and goes skiing, snowboarding etc.

DH now has a limp and is stringing it out as long as he can before he will need a hip replacement. I know this is at the severe end of the scale but what I wanted to show you was that even at this level it didn't really affect his childhood and what he has achieved.

[Debs75]

My nephew was dx with perthes at around the same age as your son.
He had traction for a while then aged 7-8 he had two big operations. One he was in a hip spica cast where they cut the tendons or muscles and stretch the legs apart. Legs are in a big V shape. This is supposed to help with mobility. He then spent several years in and out of a wheelchair, unluckily both his hips were affected.
Luckily since his early teens things have got better. Not sure if you know but it can reverse, or at least not get any worse. Nephew is 22 now and still limps, well kind of waddles. he isn't in pain unless he is on his feet all day or it is damp. He too has been told he will need a hip replacement and that could be anytime from 21 onwards. His consultant wants him to tough it out till he is mid 30's at least.

Unlike mmojies DH he wasn't as active as dsis was very paranoid about him getting hurt. Consultant did say he can do these sports, biking, horseriding, football but if he falls on his hip it could damage it. She then put a stop to sports.

I hope this helps. like most things it is a spectrum with some people being very affected and some not as much

[hawkmcqueen]

Thanks for the replies. I just found out I would be waiting 6 months for my referral so having a private consultation in 2 weeks to get some perspective on DS's situation. So here's hoping he is on the mild side of the spectrum. Thanks again :-)

[Em3978]

I had perthe's disease too, apparently its more common in boys than girls though. I had a mild case, mostly affecting my left hip, but I managed to avoid being in plaster at all. I had to avoid most physical activity for several years (i really didn't mind that at all!!!)
After my recovery, and from about the age of 9 I could do whatever I wanted, physically and I have almost no sign of having had it (my left hip still gets a bit clicky), I can run, climb, ride horses etc.
I'm 35 and no sign of needing a replacement yet!

[madbrandon]

My son Brandon (9) has Perthes (approx. 2 years now). We have just come through having a fixator on for 16 weeks and we are now on the road to recovery (I hope).
Lots of physio, swimming, cycling so we can now build the muscle back up in his leg so he can walk without aids.
Its been a rollercoaster emotions for the family mainly because Perthes isn't a short term disease it can take years to get through which is the hardest part to accept.
I am sure all cases differ from child to child and as this disease is rare more research is crucial.
There is no confirmed information on the cause of Perthes to date.

[justsodamntired]

I had perthes 30 odd years ago, aged 2. Saw 3 specialists, 2 of them recommended strapping me up but the 3rd said to do nothing so my parents did nothing and it just healed itself. Hth.