My son was diagnosed with idiopathic chondrolysis

Discussion in 'General Parenting' started by Shaleah, Sep 6, 2012.

  1. Shaleah

    Shaleah New Member

    My son has been diagnosed with idiopathic chondrolysis. Does anyone know anything about this disease?
     
  2. shellyd67

    shellyd67 Active Member

    I sure do. My daughter was diagnosed May 2011. She is doing great now ! I did extensive research and reached out to Doctor's all over the country. There is very little info and not many case studies. What kind of therapy does his Dr suggest ? My daughter was on a cpm machine 12 hours per day (usually at night) and had extensive physical therapy at our local children's hospital 3x per week. We also did PT at home 2x per day. Any ? I can answer I will be glad to. It is such a scary & trying time. Again my daughter is doing well. She did lose 10% of her range of motion permanently but it is hardly even noticable and does not effect her at all.
     
  3. Shaleah

    Shaleah New Member

    He has been doing physical therapy for about six months. It has taken nine months and five different doctors to daignose it. We just got a diagnosis this past Thursday. The dr. that we saw on Thursday said he would like to do surgery but he wants to talk it over with his collegues. He is suppose to call us later this week to let us know what they decide. I have never heard of a cpm machine.

    The first doctor we saw said my son had a bone bruise and put him on crutches for eight weeks. When he came off of crutches he could hardly walk and his hip was so stiff. We have made a lot of progress but he still can not walk correctly. His attitude is wonderful though and I am so greatful for that.

    I would love to know more about your experience with this. What doctor did you go to? How long did it take for them to diagnose it? How long did it take her to heal. Is she still doing therapy. It breaks my heart to know that other kids have experienced this also. Thank you so much for being willing to talk about it. There is little information about it. I emailed Children's Hospital of Philadelphia. I hope to hear back from them soon. I want to know what all our options are before we choose surgery and with it being so rare I want to know what every doctor with experience has to offer us before we decide.
     
  4. shellyd67

    shellyd67 Active Member

    I am going to private message you my email.

    I am assuming you live in the Philadelphia area ? I live in that area and chose to use AI Dupont in Wilmington Delaware. (only 15 minutes from my house)

    My daughter was diagnosed quickly by a Pediatric Orthopedist who also specializes in Oncology.

    He did extensive testing. First he did bloodwork, xrays, cat scans and then a full body bone scan. He and a group of his partners had many meetings and conferences to discuss and confirm my daughter's case.

    She also had joint manipulation and a steriod shot in the ER. This was also 100% confirmation of her diagnosis.

    She was misdiagnosed at first with Idiopathic Osteo Osteomia (sp?) Of course Idiopathic means unexplainable.

    A CPM machine is a motion machine normally used for knee and hip replacement therapy in adults. It allows continuous motion to promote healing.

    There is little information on this disease and I did reach out to a Professor from Brown University who did case studies on it.

    He informed me that his study, a 5 year old boy used Enbrel ( the medication for rhematoid arthritis) and had no luck.

    He also told me the boys' brother was diagnosed shortly after. That would lead me to believe this could be genetic ?

    My daughter also had a great attitude and believe me this helps with healing. She was diagnosed in May and by the beginning of September she was back to normal. She did loose 10% motion permanently but it is almost impossible to notice.

    I look forward to hearing from you. Shelly:smiles:
     
  5. Shaleah

    Shaleah New Member

    Hi Shelly,

    Your email address is not in my messages. I can't figure out how to private message you on this website. I would love to talk to you more.

    Thank you,
    Shaleah
     
  6. InsaneCdn

    InsaneCdn Well-Known Member

    Shaleah,

    I'm assuming you're posting from a computer, not a mobile device...

    See Shelly's tag on the left side of her post?
    Click on that, and you'll see about 6 options... on of which is "private message".
     
  7. Candace

    Candace New Member

    Hi Shaleah and shellyd67,
    I was doing a little online research and stumbled upon your post in this forum. My son was diagnosed with idiopathic chondrolysis of the hip a year ago. He was 13 at the time. He's been through physical therapy which did help some but he's not 100% better. He has a gate when he walks and its obvious his hip looks crooked. People ask him all the time what happened...thinking he injured his leg or something. My husband and I are in search of a new doctor. We are hoping to find someone with more knowledge on this disease as it seems that most doctors are unsure of what to do about it. It's VERY frustrating. My son has been through so many x-rays and even an MRI. He's very frustrated that he can no longer play basketball. He is done with his physical therapy(because of insurance reasons) and now we are in search of the right doctor. A couple doctor's wanted to do surgery. Also, we've been told that he will need total hip replacement surgery when he's 20. :(
     
  8. shellyd67

    shellyd67 Active Member

    Hi Candace,

    I know the frustration. What kind of surgery was your son's Dr. suggesting?
    Based on yours and Shaleah's posts my daughter had a different care plan.

    Insurance issues do not help the matter. We paid over 3,000.00 out of pocket and still owe the Children's hospital over 3,000.00 and we will pay them every penny.

    We live in the Philadelphia area and have great advantage of the best Children's Hospital's.

    What area do you live in ? If you have a Shriners' Hospital in your area you can appeal to them and their services are free. They specialize in Orthopedic issues in children. It is worth a try.

    If you would like the name and telephone number of my daughters physician, please inbox me and I will provide it.

    Good Luck ! Shelly
     
  9. Shaleah

    Shaleah New Member

    Hi Candace,

    My son's doctor is also recommending surgery if we don't see improvement from therapy in six weeks. From what we have been told there is not one specific treatment that will be successful. Every child's case is different. I am so sorry your son is having to go through this. You can private message me if you want to talk about it.

    Shaleah
     
  10. gcc

    gcc New Member

    Hi, My son (14) has just been diagnosed with idiopathic chondrolysis also. He is taking aleve 500mg 2 x day and will start physical therapy twice a week. What type of PT helped for your children? How long did it take to see improvement? My son cannot put any weight at all on his right leg and can only get around on crutches. His foot also swells and turns purple when he is up and about for any length of time. Have you had any experience with this symptom? It is so hard to find out anything about this.
     
  11. Liberty

    Liberty Guest

    My 17 yr old son was just diagnosed as well. He is on crutches. Taking. Naproxen and doing PT. however, we don't see any improvement. Since you posted this awhile ago, how is your son at this point?
     
  12. gcc

    gcc New Member

    I'm sorry to hear about your son and glad to hear from you. This is a very frustrating condition since there seems to be so little help. My son started hurting in his right hip about a year ago and within a couple of months was in extreme pain and would barely get off the couch or leave the house for a couple of months. He was admitted to the hospital for a couple of days until diagnosed with idiopathic chondrolysis. He had to use a cpm machine for 12 hours a day which was very hard and he got very depressed. He hated it but I think it did help stop any kind of muscle contractures from him not moving. After a few more months he learned to deal with the pain enough to get up and about with crutches and the hospital referred him to the chronic pain clinic. The aleve made his stomach upset but he is now taking tramadol (ultram) and lamictal (lamatrogine). They are helping and he also saw a therapist at Childrens Hospital for pain management tools and cognitive behavioural therapy. He is also doing physical therapy and is managing to get around with just one crutch now but I think he has just learned to manage the pain as opposed to the condition getting better. It has been awful for him as he was a soccer player and snowboarder and his whole life has been turned upside down. He is seeing the orthopaedic surgeon now every few months and it seems to be just wait and see - no real idea of if or when he will get better. I would love to hear more about your son and how he is doing so please post back.
     
  13. Lorrineperu

    Lorrineperu New Member

    Hello,

    My daughter was just diagnosed with this too. Everything started about a year and a half ago with a limp that progressed. Finally we got an orthopedic consult and they decided she had a SCFE. Did surgery inserted a pin and were told in 6 weeks she would be fine. She wasn't, then referred to Rheumatology and underwent tons of physio, Rheumy medications, joint injections, etc and nothing helped. Finally this summer they did a synovial biopsy and found no inflammation. So now we were told this is what she has, she has been referred to a surgeon for hip replacements. She has gone from running and jumping a year and a half ago to being totally in a wheelchair with no joint space or cartlidge left. Its bone on bone on both sides. Her only option we are told is total hip replacements. She is 12 years old. So now we are waiting for the surgeon consult and a point where she can't tolerate the pain any longer. She's on 500mg naproxsen 2 times a day, they want to take her off that and just use tylenol and advil but when we tried she was in such pain all she did was lay there and cry so I put her back on the naproxsen. Does anyone have experience with pain medications that are less hard on the stomach and effective on the pain??
    Thanks and nice to meet you all
    Lorrine
     
  14. gcc

    gcc New Member

    Hi Lorrine,

    It is so hard to see your child in pain and I really hope that the hip replacement happens soon and helps. We have not really found any pain medications that are very effective but the naproxen is tough on the stomach. Tramadol (Ultram) seems to be the best for my son and we are also starting Celexa which is actually an anti- depressant but the pain clinic doctor says it works on suppressing the nervous system and should help with pain. Which hospital are you using and do you have a pain management specialist as opposed to just the ortho surgeon?
     
  15. Shaleah

    Shaleah New Member

    Hello, I am sorry to hear to about your children. I believe watching them suffer and not being able to do anything to help them is one of the hardest things ever. My son is doing much better now. He is not in any pain and can walk much better. We were blessed with an incredible dr. in Austin Texas. His name is Dr. David Harris. He is a pain management dr. He has done injections in my son's hip. He has done two different kinds. One was a prp injection. The prp helped heal the bone and regenerate cartilage in his hip. It is amazing when we compare his x-rays from the beginning to his most recent. He also did a steroid saline injection. It is not the typical steroid injection that is given. With each steroid injection my son's range of movement increased. Please let me know if you have any questions.

    Shaleah
     
  16. gcc

    gcc New Member

    Thank you so much for the information and I am very happy to hear that your son is doing so much better. My son is scheduled for a nerve block injection in a few weeks with the pain doctor. I will ask them about the PRP injection when he sees the ortho specialist again next week for another MRI and follow up. It is so hard to find information on this condition and anything that helps so your post is very much appreciated.
     
  17. Lorrineperu

    Lorrineperu New Member

    Hello,
    I'm located in Canada and we've been going to the Toronto Hospital for Sick Children. She has since been referred to the pain clinic at the hospital and we have been referred to a top hip replacement surgeon. We see him next month...they gave us some nexium to give her to protect her stomach. Unfortunately any other medications we've tried hve either been ineffective or she simply refuses to take them because of taste. This disease sucks!!!
     
  18. Shaleah

    Shaleah New Member

    Hello,
    I was wondering if any of you had any updates. My heart hurts for you and your children and I think about you often. We are at the point where our son is doing really well but we still have rough days. He is no longer in pain but his walking does fluctuate from really good to not so good. On those days where his walking doesn't look good or he is extra tight I am reminded of your children and what this disease has taken from them also. It is crazy how one day my child was a major athlete. It was November 2011, he place 10th out of over 300 students all the same grade in the mile race. One month later he started complaining of pain in his left hip. I will never attend another race and not think about when his legs moved without any effort. I now cry watching my other children's races. I am very grateful that his legs move the way they move now, that he has made the progress he has made. I am grateful he was able to mourn the freedom of movement that he lost and I am grateful that he embraces the challenge he is faced with now everyday.
    I am thinking of you all today!
     
  19. Lorrineperu

    Lorrineperu New Member

    Hello all,
    We saw the Orthopedic surgeon for my Katie in December. He felt as the other doctors we have seen that there was only one real option left. So, She is scheduled for her first of her hip replacement surgeries on May 9th.
    Would have been sooner but our surgeon is having surgery himself.
    She also was diagnosed with Protrusio Acetabilum. forgive me if I messed up the spelling of that.
    So she will require bone grafts at the time of surgery to rebuild the cup part of her pelvis.
    This is going to be a long recovery. But her pain is getting so bad and she has no quality of life at all.
    I'll keep you posted on how it goes.
    Hope all the kids here, God grants a cure to!
     
  20. Concern Mom

    Concern Mom New Member

    My son age 17 has Chondrolysis of hip is there any support group in the Metro Atlanta Area for parents and children
     
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