LCPD since 27 years, what should i Do?

Hi my daughter was one of the first female children to have perthes desease she was only 3 now in her thirties she is starting to have pain we were told she might a hip replacement when she is in her forties .

Hi,  every child is different and their is still a great deal of confusion and controversy about Perthes, it's treatments and outcomes.  Some people have needed hip replacement as young as 20 others not at all, it all depends on the shape of the head of femur when Perthes has ended.  There is also a lot of controversy about statistics, I don't know where you live, but we have records of girls having Perthes going back to the 1920's and I'm pretty sure they found that Tutankaman had Perthes disease.. I know he was a man, but records didn't begin on Perthes until 1918... We have many women who were NOT diagnosed as children but, having developed osteo-arthritis of the hip have gone on to be told they must have had Perthes as children.  I hope your daughter is getting plenty of support and physical therapy.

My daughter had to undergo 2lb bags on her feet to pull her ball joint away so she could go into plaster for four years she has the love and support of her family

Yes that treatment was quite common, such a shme to spend that length of time in plaster and still need a hip replacement, Best wishes to her and all the family

Thank uou for your support.

right now doctors suggest the same like cycling & Smimming. now got little releif of pain. but difficult in walking when sitting in chair for prolonged time.

Yes,  I understand, it' really hard, like manual work isn't good but sitting in an office kills too.. some people have special standing desks that can be lowered so that you can choose your position but it's a bit of a hassle,  cinema and theater are difficult too so I recommend an air filled cushion to sit on, it does help and makes you a little higher too

Thank you for reply. Now i got releif from pain but when ever i stand (sitting down & chair) it is very difficult to keep my leg straight i feel it is strucking in ball & socket joint and the pain is like will get tears. what would be the possible reason and also pain is not regular now i got pain after 13 yeras.mean while i forget about i am having this problem whay it like that, help me out

You need to see your physician for an up-todate x-ray as it sounds sadly that due to the deformity in the head of femur caused by Perthes and the consequent incongruent joint, that you have signs of early osteoarthritis.  Exercise will help, but I think it is important to see your physician and let him or here assess exactly what is happening. Best wishes.

Can I do cycling & exercise when I am having pain

Take your anti-imflammatory drubs and pain killers before exercise - if in pain - rest!  Don't push yourself too hard, its quality not quanitity so a gentle cycle ride is better than a long hard ride uphill.

drugs that was not drubs.. sorry its been a long day!

Hi my daughter was under the specialist who first developed the treatment of children with pethes desease

Hello.I was diagnosed with perthes at 11 years old,I'm 40 this year and I'm female,i have been through a lot since I was diagnosed.traction on and of,an operation,they put a metal plate in,it was taken out 3 or 4 years later.they had to cut muscles underneath as they got tangled from me crossing my legs.crutches,learning to walk again etc.I was told I would be in a wheelchair by the time I was 30.I'm still going and hopefully won't need to have a hip replacement for along time yetall the best for your daughter

Thank you it was hard for her but she coped with it hope she doesnt need one

Hi sorry to hear you had a lot of problems from perthes desease itsa cruel one to have to have my daughter go through it was heartbreaking but fairplay she coped and made the most of it making everyone laughon the way the day she started to walk was the best day of my life to see her now is brilliant though she is starting to have pain in her one hip but she doesnt complain hope u r well

Hotpicks99  There are dozens of different treatments for :Perthes dating back to 1913, which treatment do you mean?

To be able to walk with out pain is the best feeling.Makes me grateful that I can walk!!!!I hope she will be OK and I have heard that hip replacements are much better than they used to be

Know the feeling i have all day every day on morphine now hope the operations r ok cos thats what im worried about for her

Being in bed not being able to get out of bed for ten days while having weights on your ankles to pull the ball in the hip jointaway so the ball joint died and she went into plaster like a frog so the ball inside the joint could regrow if my memory serves me right been a long time now

Poor girl thank goodness that doesn't happen any more !  We still use skin traction if needed to get some movement back, but even plastering is only temporary nowadays except for in a few places.  Most consultants recognise that long term plaster casting does not have any beneficial effect.  In the bad old days, kids were put to bed on A frames for anything up to 3 years, nd the longest I knew a child in plaster was back in the 80's when a child was in plaster for 4 years, sadly he had just been told he could come out of plaster after 2 years when they discovered it had developed in the second hip. KInd of illustrates that non weight-bearing isn't the way forward in prevention.

 

My daughter only complained if the edge of the plaster wasbreaking off and cutting into her legs the hospital placed sticky bandage on the edges to help also they told her that she couldnt put weight on her feet at any time a boy who wasa bit older who had the same thing didntlisten now he walks with a limp permernantly

The thing is, there is no evidence to support that the boy would had been any different if he hadn't walked - that's the whole problem with Perthes - no one treatment has been proven to work better than nothing at all - chances are your daughter would hve got better without the plaster.  Perthes Association has just given a grant to researchers who are trying to establish whether even surgery benefits the child in the long term.  I have a son who had bi-lateral Perthes and M.E.D. who walks like a sailor onboard a ship, but the Professor who took care of him thought he would never walk without aids and predicted hip replacements at 20.. he's approaching 30 and still doesn't need them yet - things change all the time and we are hoping by the time he is at that stage that the new stem cell treatment will be available to everyone and he can grow his own new hips

Hope so fpr future generations my daughter wouldnt walkes if she didnt have the plaster on that was one of the symptoms that got us to the doc and falling down a couple of stairs

I had traction on and of for some time when I was younger,I was told its hereditary but a docter couple of days ago says it isn't as my daughter is having pains in her hip.I was told I'm not a text book case!!but the sound of growing a new hip sounds good

I dont know if its hereditary but i f i was you i would push to have your daughter checked noone in the family hadnt suffered from it

It's definitely NOT hereditary, there is a good link on http://www.orthopediatrics.com/docs/Guides/perthes.html and quite a few links on the Perthes Association website as well.

Perthes isn't hereditary,  there is no more risk to your daughter than to any other child, but if she develops a limp get her checked out - no point asking for her to be checked if she has no symptoms as the only way to diagnose is by x-ray.  Hopefully it's growing pains but keep an eye on her 

Yes she's having an xray tomorrow.I hope its just growing pains but its exactly what I was told(growing pains)years ago!but I will no next week.

Thanks for your reply appreciated

hi,

 now i am not having much pain. i am doing regularly cycling & exercises. thank you for your suggestion. 

so suggest others also do gentile cycling which will give motion to hip bone and pain will reduce.

I was hospitalised on weighted traction for around 2-3 months when about 5 years old, back in 1971, after being unable to stand one morning- mum took me toA&E thinkingI'd broken my leg doing handstands the previous night. Am 49 this year! My mum/dad always told me it was called ''Irritable Hip'', itwasn't until I saw a hosp consultant when about 30ish after a back injury/work related lower back prob that this chap told me I didn't have any lasting back probs, and the 'weak back' was probably all due to having Perthes as a child. 'Active' as a kid - horseriding and lots of cycling, with no memory of any hip pain at all. He said I'd prob need replacement in my forties/when arthritis really kicked in. I laughed that off (as you do) and went back to nursing. Seems about every 5 years or so the pain returned (always in unaffected leg/sciatica etc), and acute flare ups for about 3 months normally. Saw another hosp doc about 5 years ago after same problem; again it had resolved but he was convinced i needed a hip op.  Another flare  up/sciatica session about a year after that  I went to acupuncture/physio who solved that nicely, and sort of straightened a kinky lower spine - she did however tell me it would prob mean the root cause, ie Perthes related hip damage to other leg, would prob get worse. I laughed that off too. She was right! Creeps up, it does. Went from an occasional paracetamol to regular to occasional ibuprofen to both and then deciding when couldnt paint toenails on bad leg, get socks/tights on easily and getting knocking in knee plus now can't shave my leg in bath I really needed to see my GP. Been putting it off for a couple of years but mostly due to still working and not particularly wanting an op. SO here I am now on antiinflammatories and waiting for result of xray before deciding what Doc wants to do with me. I'm a good 10 years older than your daughter, and hope she doesn't follow a similar path as I, but I can probably say that yes, with hindsight, I probaby did need more attention when i hit my early forties. I was always told it was unusual for females to have it (my little brother also, but his resolved with bed rest). I now think its probably much more common in girls than previously thought. And that if your daughters pain starts interfering with her lifestyle she should see her doc sooner than I did. And that your knowledge of her having been diagnosed with perthes is invaluable - my mum still can't rememberever beingtold that was my problem back then.

 

I had it when 4-5 years old. My brother around the same age. My dad's just had his second THR and was disgruntled (to say the least) that he had never been told he likely had it as a child. 2 of his siblings (my aunt and uncle) have both had 'THR' due to osetoarthritis at young ages (in their 50s). I will read that link but maybe theres some other genetic link/hereditary issues? Must go read it, thanks for the info and also check out perthes association site

You're welcome. Hope it helps

Hi, Gill and others.

I have begun to suffer with pretty chronic pain too recently.

I was diagnosed at around 9 years old, had surgery when I was 10 years old (various osteotomy), pins and plate out 6-12 months later (I can't remember how long it was, off hand!) and was told that, if I kept playing sport, I would have an artificial hip by the time I was 25.

Well, I am now 43 years old. So that doctor was wrong. However, I am currently going through more pain than I have in a long time.  Just had Xray done and it looks pretty bad, but hey, it's perthes, what can I expect. Now waiting to see what doc says.

Frankly, I am not convinced that osteotomies are the best solution.  I have no abduction, the musculature around the whole hip is mashed up. I still have atrophy in my right leg. And now I am experiencing chronic pain.

32 years after my operation and the suggestion seems to be that no one has come up with anything better than surgeons cutting us open and breaking bones.

I am also asking the question: has anyone been doing research into the long term effects of this condition and long-term prognoses, such as hip replacements, etc.?  I couldn't find any good research.