Discussions By Condition: Bone conditions

Legg-Calve-Perthes Syndrome?

Posted In: Bone conditions 11 Replies
  • Posted By: Anonymous
  • April 24, 2007
  • 03:59 AM

My 29 mo. old gson was diagnosed today with LCP. Does anyone have any experience with this problem?

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11 Replies:

  • hi, my son just got diagnosed with perthes as well. let me know how your grandson is doing! the doctor just told us to have him not to jump or run anymore....christine
    Anonymous 42789 Replies Flag this Response
  • My son is now almost 7 years old. He started limping in preschool (4 years). At 4 1/2, his diagnosis was confirmed.It was impossible to restrict my son's activity level. He was very active. We have discovered that he self-regulates his own pain. If his leg hurts, he stops running.The femoral head completely collapsed and started regrowing in August 2006. Our son used a wheel chair between August and October when the pain was significant. It was frightening during this period because I didn't know what was happening. Although, I could tell he was in more pain. I was a bit frustrated with the doctor who only told me --"do nothing. There a few bad things that can happen but you will know." One day, our son woke up and couldn't walk. We rushed to the orthopedic surgeon and we were told that his leg muscles needed to relax. After the 3 month period, he started walking and playing again. We did hold back our son in kindergarten because he was unable to concentrate during the day. He often had to get up and move around the classroom. He was occasionally rocking back & forth during class which I later discovered was a positive way to disassociate himself from the pain. As the pain has subsided and he is able to concentrate, he is now at grade level and doing just fine. The wheelchair experience seems to have had a minimal impact. In fact, all his classmates helped him during this period. Overall, our son is doing well. We have followed our doctor's advice -- do nothing. We have a yearly doctor's appointment. Our next check up in May 19th. I am sure xrays will be taken and we will access regrowth progress and leg length issues.Hang in there. I was so frightened when my child was diagnosed. Overall, our son is doing fine.
    Anonymous 42789 Replies Flag this Response
  • Hi,My son was diagnosed with Perthes in January of this year. He just had his 6th birthday. A few days after his 6th birthday he started wearing a Scottish-Rite brace to hold the bone at an angle to protect the femoral head. It is very difficult to walk in and he wakes up some nights with knee pain and probably just uncomfortable having to wear this brace 24/7 excepts for baths and going to the bathroom. The good part is that the ortho said he can swim without it as much as he wants!!! We will be living in the pool this summer!I am looking into different ways to help my son. I trying to find information regarding vascular surgery to restore the blood supply to the femur. I've been told that there is this type of surgery on the east coast of the United States. Someone mentioned Duke University to me. Have you heard of it?If anyone has any information regarding vascular surgery for Perthes I would greatly appreciate it.Diane
    Anonymous 42789 Replies Flag this Response
  • Hi,My son was diagnosed with Perthes in January of this year. He just had his 6th birthday. A few days after his 6th birthday he started wearing a Scottish-Rite brace to hold the bone at an angle to protect the femoral head. It is very difficult to walk in and he wakes up some nights with knee pain and probably just uncomfortable having to wear this brace 24/7 excepts for baths and going to the bathroom. The good part is that the ortho said he can swim without it as much as he wants!!! We will be living in the pool this summer!I am looking into different ways to help my son. I'm trying to find information regarding vascular surgery to restore the blood supply to the femur. I've been told that there is this type of surgery on the east coast of the United States. Someone mentioned Duke University to me. Have you heard of it?If anyone has any information regarding vascular surgery for Perthes I would greatly appreciate it.Diane
    Anonymous 42789 Replies Flag this Response
  • What a small world this is. I was on the internet helping my son find information on LCPD for his college research paper. The reason he chose this topic is that he himelf had LCPD starting at the age of 3.Before I tell you more I want you to know that he is a very healthy almost 20 yr old young man. He is attending college on a soccer scholarship. You would never know that he went through several years of treatment.We were told to immediately get in touch with Shrine's Hospital. The nearest one to us was 6 hours away. The best thing to do is get in touch with a local Shrine temple. These people are amazing, experts with this disease, and did not charge or accept payment for their services. There is not one day that I do not thank God for leading me to them.Before I would ever have surgery done I would check with them. Not to say in some cases that it is not the only alternative, but I think the other options should be checked first.Best of luck to you who are going through this now.
    Anonymous 42789 Replies Flag this Response
  • Hi, I am living in Turkey, My son was diagnosed with Perthes in January of this year ( we became aware of that). I am looking into different ways to help my son. Now we do noting for getting recover. Waiting time to past. Could you share your experience with us. We are so sad as parents. Have you done some phisical exercise during treatment ?Have you used any drug ?How long time need for healing?Did you restrict your soon daily life durig disease?After recover fine, can he play football ? can he bike, can he run ?What is your other suggestions ?If you have any information regarding treating for Perthes I would greatly appreciate it.Vedat Bektaşvedat6134@gmail.com
    Anonymous 42789 Replies
    • February 17, 2009
    • 00:57 PM
    • 0
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  • What a small world this is. I was on the internet helping my son find information on LCPD for his college research paper. The reason he chose this topic is that he himelf had LCPD starting at the age of 3.Before I tell you more I want you to know that he is a very healthy almost 20 yr old young man. He is attending college on a soccer scholarship. You would never know that he went through several years of treatment.We were told to immediately get in touch with Shrine's Hospital. The nearest one to us was 6 hours away. The best thing to do is get in touch with a local Shrine temple. These people are amazing, experts with this disease, and did not charge or accept payment for their services. There is not one day that I do not thank God for leading me to them.Before I would ever have surgery done I would check with them. Not to say in some cases that it is not the only alternative, but I think the other options should be checked first.Best of luck to you who are going through this now.Hi Lynn,It was reassuring to read your post about your son. My son is now 13 and was diagnosed with advanced LCPD at 8. He has always been an active soccer player so it was crushing for him to stop. At 8, he had a 3 surgeries (one major) to change the angle of his pelvis to protect the head of the femur inside the socket at Shriners in Portland, Oregon and ended up in a wheelchair for 4 months. We were hoping he was done, but the pain returned this Summer during a soccer tournament and his surgeon at Shriners believes he has a cyst on the inside of the socket which the ball is irritating. He has to stop all activity, including his beloved soccer, until February when he's scheduled for an arthroscopy.Would it be possible to have your son talk to my son, Cian. He's broken-hearted about losing his entire club soccer season right before he gets ready for HS. He wants to play in college and it would be wonderful for him to perhaps talk to another boy (young man) who has gone through the same experience. Thanks, Finn
    fuzzyfinn 1 Replies
    • October 19, 2009
    • 03:53 PM
    • 0
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  • My 29 mo. old gson was diagnosed today with LCP. Does anyone have any experience with this problem?Hi I had LCP as a child I had plaster casts with a bar across on my legs until the bone repaired itself, when the casts were removed I had yearly checkups till the age of 16. It didnt stop me doing anything as a child I ran did sports and was just like any other child, until now at the age of 50 I have a severe pain in my hip and have be told that I have osteoarthritis and may need a hip replacement.
    Anonymous 42789 Replies Flag this Response
  • My son is currently 23 years of age, he was diagnosed at approx age 2 with Perthes Disease. He has begun to have flare ups in his hip again and is currently walking with the aide of a cane. I am very frustrated with this. When he was first diagnosed the Doctor said to keep him off his feet. My son was age 2 but I did the best I could, he recovered ( for lack of a better term) and I am just now finding through this forum that others diagnosed in their younger years are also having this issue of the pain and discomfort coming back. In reading through this thread about hip replacements and such I wonder why the heck didn't they do it when it was first diagnosed?? I pray all of you in pain and discomfort find some sort of comfort, I don't know how but I do pray for all of you and my son as well, I am truly heart broke. :(
    Mizz James 1 Replies Flag this Response
  • I grew up with parents who didnt believe in doctors or pain medication. My dad used to think I was a lazy sook every time I said my legs hurt. I found out about my bad hip when i took myself to the doctors at 14. They said it needed replacing. When i was 18 i went to another doctor who diagnosed it as Perthes. I never had any treatment or took any pain medication. I worked 12 hour shifts in hospitality for years until I got pregnant with my first child. After my pregnancy my hip was totalled. At 24 i was offered a hip replacement and now its so good i cant believe how easy things are to do. My point is, even with no treatment or pain killers to elleviate the pain, I still managed to live a full life. Now that my hip is fixed i realise it could have been better, but I didnt know that then and managed to be completely independant since I was kicked out at 14. I walked everywhere, used public transport and worked my **** off to support myself. And I survived. It's not a death sentence and it's nothing to get all stressed over if you find out your kid has it. My case was extreme but a lot of cases clear up before the teen years. Even if they don't, try not to treat your kid like a cripple.
    leilani 4 Replies
    • September 28, 2012
    • 03:33 AM
    • 0
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  • I had my hip altered at 7 due to perthes and now at 25 i am getting a total hip replacemtn. Ignoring it will make life not so fun. Surgery is your only option for a more normal active life. Longer you wait more pain and bone damage you get. A hip replacement will do amazing things and remove major pain. Good luck keep a tight family support system. Research well your orthopedics.
    Anonymous 1 Replies Flag this Response
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