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Son was diagnosed with Perthes at 8 1/2 years old, going to be 10 in a few weeks.

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janet2121
janet2121

He's in the worst stages of it since February of this year, suggesting surgery because if we wait another year he will be in the healing star & dr said they will not be able to do surgery then. Has anybody heard that before?? Dr also said that surgery will hep heal t better. By we can also do the wait & see as he can go through healing phase on his own but we would have to go by X-rays etc to see how he's progressing. We are trying to decide what to do as he's at the point after a year and a half that he wants to run and do sports like he used to with his friends. It's a big decision & it's hard to figure out what to do. He's not in any pain & has good movement dr said considering he's in worst star of it. He swims & rides a bike a lot & goes to P. t.

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4 Replies

  • derek76
    derek76 janet2121

    Posted

    Things have changed. There was no surgical option when I had Perthes at age 8 in 1942. The treatment then was to put your leg in traction with heavy weights. In my case for two years and then wearing a caliper for about two years. The doctor told my mother that I would be crippled by arthritis by the time I was 35.... as he himself was.

    It didn't happen. I cycled and walked everywhere as I don't drive. In the past twenty years I've had some slight stiffness and pain at times but not enough to really bother me. Sitting for long periods usually brought it on. A day on a bus and then a boat in Australia seven years ago had me worried but the next day I was walking up sand dunes and over big rock formations on Kangaroo Island. Two girls who were struggling said, Look if that old guy can do it so can we!

    When seeing consultants about it I was first told that you will probably never need a hip replacement. The next one said you may need one one day but not yet. The next one said that I am much better than my X-Rays suggest and finally two years ago another said that if he did a hip replacement I would be back to complain as it would not stop the pain or stiffness.

    I hope it works out as well for your son as it did for me.  

     

    • janet2121
      janet2121 derek76

      Posted

      Thanks Derek. Yes, the Dr did say he could have a hip replacement and get arthritis later on in life. My son swims & rides a bike & goes to p.t. for stretching, maybe that's why he has good movement. He can't walk long distances & walk for a long time & he also says it hurts when he has his leg extended while sitting or laying down, he prefers to pull his knee up. He already hurt his right foot growth plates from relying on that leg. That's healed now. He doesn't get much pain & wants to play with the other kids. Hard for him when he was playing 4 sports a year & now can't do that or even run. He does have a limp too. He didn't want surgery but now is tired after a year and a half of not being included in everything his friend do such as sports & wants to go back to that because it's been a long time. He's now going toward surgery so within a year after he can be more active. Dr said the healing would be better. I feel like he's not in pain now & is getting around well, to let it heal on its own but Dr just said next year would be too late for surgery cause it would be in the healing stage. I'm also worried about his growth spurts & his legs not being the same length. He's going to be 10 soon. I also heard that 10% of the kids prob did not need the surgery but have it & are doing well, back to some sports etc. Its a long healing process from surgery too for a kid. So we have a big decision as to what to do. Going for another opinion this summer too. Thanks for replying & your well wishes.
    • derek76
      derek76 janet2121

      Posted

      I Googled Perthes Disease and there is a lot of information about the new treatments. Some traction is still used but not long term or the only treatment as it was then. There were three other boys of my age in the ward I was in.

      I had to wear a built up shoe for a while until that leg caught up with the other. In the end the difference was only half an inch and I wear an insole with a slightly built up heel in my shoe just to keep everything in alignment.

      Had your son had any previous accident to his hip? I had dislocated my hip the year before when knocked down by a car. When my hip became painfull the next year it was initially thoght to be because of that but doctors later discounted that theory. 

      It is quite an uncommon condition and not actually a disease. I am surprised when giving my medical history to young doctors that they have usually not heard of it.

       

  • CindyRN
    CindyRN janet2121

    Posted

    Janet, My son has perthes. He was diagnosed last summer, at 13 years old. His surgeon is recommending extensive surgery within the next 12 months. We are not sure what to do. He still is able to get around and has pain only on occasion. He has a significant limp. There is no guarantee with the surgery and he may still need a hip replacement later. I am so afraid to put him through surgery without any for sure fix. I am thinking maybe we should just wait and see. If he needs a hip replacement down the road that may be okay.  I am sorry you are going through this,
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