Perthes Association website

Hi all,

My 7 year old son has Perthes disease and he has been on a rollercoaster ride over the past 12 months. Like all of the literature says, we noticed that he had a limp and he was complaining of knee pain. So of course, I was icing his knee which turned out to be useless. Oneday, he woke up and when he went to walk he collapsed. So , I immediately took him to the doctor who then sent us for xrays.
The doctor already knew what was wrong as he sent us for an xray of his hips. This is when we found out that he has Perthes. This was in March 2008 and over the next 12 months his condition got much worse and 4 weeks ago he had a femoral osteotomy.
He is in a wheelchair for at least 6 weeks and is recovering extremely well.
Like many parents, my husband and I were devastated over the thought that our little boy needed such invasive surgery but we new that it was his best chance to have a normal life.
Before the surgery, his right leg became almost 2cm shorter than his left and he was spending a lot of time on his crutches because of the pain. His right leg is now much shorter after the surgery and there is no guarantee that his leg will ever be the same length but he is virtually pain free. He is also very happy that he can now sit on the floor with his legs crossed.
Perthes disease can have a huge impact on other members of the family but we try to keep things as normal as possible and make sure we make an effort to share our attention between all of our children. Also, we let our son know that things won't be like this forever and he will oneday be running around with his brothers again.

hi! Sorry to hear the news about your daughter, Kelsey. Like you, our 5 year old boy was diagnosed in September 08 and we have had a very rocky ride. Ben was put onto traction last month and is now out of hospital but wheelchair and crutches bound. Similar to Kelsey, Ben is a v v active child who is v v frustrated by his limitations. However, we have found a couple of things that he can do and seems to enjoy: playing the recorder, junk modelling and he hits a good ball sat on his bottom!!(tennis/cricket etc). I don't know whereabouts you live? Any chance you're in the SW; would be fab to meet up with families who are experiencing the whole Perthes thing... Good luck (My original message went on the wrong Forum board!) Jo

Hello Amadsen
It's good to hear that your son, Josh is feeling a little more comfortable. Josh seems to have had a very similar operational event as I had as a child. I too, had the plate and screws once, after the operation to try and reshape the surface of the femur. However, this did encourage the hip joint to settle down pain wise, but unfortunately, it doesn't return to a nice spherical shape femur. What is important for the hip joint is that the space between the femur and hip socket is preserved. As long as this stays preserved then the joint should remain stable. I was diagnosed with Bi-Lateral Perthes in 1973 at the age of 2. I have been through many experiences with this life controlling condition.
Try to keep Josh from doing too many high impact activities as you can, it's because he'll need all the years of preservation as he can get, for later on in his years. You see, you mentioned he has a limp and it is good that he is coping with that, but what can happen (in fact has happen to me), the years of walking with a limp, puts pressure elsewhere on the skeleton, primarily the lower spine. Walking for years with an unusual gate can put extra wear on this section of the spine (as indeed it has for me) So please try to encourage him to keep doing the lower impact exercise like the swimming and cycling, for future preservation.
I hope you don't mind me making a comment to your posting, and wish Josh and yourselves all the best.