My son was diagnosed with idiopathic chondrolysis/New posts!

Discussion in 'General Parenting' started by Carolyn K, Sep 4, 2014.

  1. Carolyn K

    Carolyn K New Member

    Hello everyone! I hope that you all will somehow get this message because it seems like no one has logged on for awhile to post anything but I can really use some advice.
    My 10 year old daughter has just been diagnosed with chondrolysis of the left hip. We live in Canada and had an appointment at Sick Kids yesterday where we got this diagnosis. It's been 3 months of trying to figure out what is wrong, with a first diagnosis of SCFE but then finding out that's not it after all. I'm sad and frustrated at the same time because we've been told it's a diagnosis of ICH because of her low level of cartilage but we were also told it's not an easy diagnosis and other things have to be excluded first. We're only managing her pain with crutches and Advil. Physio starts next week. And we go back to see the specialist in 3 months. This doesn't seem like a treatment plan to me. What else is there? What should I be doing to help her? Did you take your kids out of school because of the pain? Did you reduce their hours at school? Will she get better??? Do I need to get a second opinion?
  2. sirjames

    sirjames New Member

    Hi Carolyn,

    When someone posts a message, I receive a email notification and it is not often people read this forum. Usually with SCFE, the child is suffers from obesity. If you have not already, please read my previous posts. The thing is ICH is extremely rare and unless a majority physicians love reading research, they might have limited or zero experience with ICH. The best advise I can give you is to location a orthopedics surgeon who has experience working with patients who had ICH, they will be able to give you options.

    Crutches are just to keep press off his hip and the NSAID's for pain, these are the norm for managing pain. You are correct, there is a lot of things that need to be excluded, it is a long and troubling process. Seeing the PT will help keep with the muscular strength and flexibility, this is very important. Keeping your daughter out of school will not help, it is good for her, though she does need to limit pressure on her left hip, so she should be careful with PE class.

    The best physical activity for her should be aquatics, as it limits applied pressure on the lower extremities.
  3. Carolyn K

    Carolyn K New Member

    Thank you, sir James for your reply. We did actually see an orthopedic surgeon yesterday and he's the one who gave the diagnosis.
  4. Carolyn K

    Carolyn K New Member

    Sirjames: I am new at replying to this thread, so please excuse my novice attempts at responding. I have read all of your posts and your info has helped me tremendously. I think my daughter fits the ICH profile to a "t." And she is bi-racial as I am Caucasian and my husband is Trinidadian so she does have a darker complexion/more melanin. I have also found that there isn't a lot of information about ICH and I'm curious if you've found any more cases...when you quoted 120 cases reported, were these statistics worldwide?
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Hi Carolyn and sirjames,
    I decided to start a new thread because the one you were posting on was an older post. Our forum is for parents of kids who have struggling behaviors and not so much physical which might be why you haven't seen a lot of responses. I hope you are able to find what you need.
  6. Lorrineperu

    Lorrineperu New Member

    Hello Carolyn,

    I'm also in Canada, Toronto to be exact!

    Your story sounds very similar to mine. My daughter Katie was finally diagnosed with ICH only it took them a year and a half to figure it out. It started with limping, finally after months of trying to get her seen I emailed the head of orthopedics at Sick Kids and he got the ball rolling. The same day she was seen I was told she had a SCFE. They did surgery and pinned it the next morning. We were told in 6 weeks she would be better. But that didn't happen. When she didn't improve they referred us to Rheumatology. She spent a year of trying so many different drugs and nothing worked. Finally they did a biopsy of what little was left of her cartilage and discovered no inflammation. She referred us back to Orthopedics and at that time we were given the diagnosis of Idiopathic Chondrolysis. During this year and a half it developed in her other hip too and so both hips had damage beyond repair. That diagnosis came a year ago approx.

    Last May 27th my Katie had a left total hip replacement. They brought a adult hip replacement specialist from St. Mikes to work with Dr. Wedge and together they replaced her hip. It was instant pain relief, well except for the surgical pain but that got better quickly. She did however develop a severe DVT in her right leg that sent us back to Sick Kids from Holland Bloorview rehab, and she had to have another surgery but since then that is much improved.

    On November 3rd she is scheduled to have her right hip replaced.

    Katie turned 13 in August. It all started 3 years ago Christmas time. Although thinking back the 6 months prior to that she had showed some subtle symptoms that I felt was probably just sore muscles from taekwondo etc. It wasnt tho...

    Who is your doctors at Sick Kids?

    I did indeed take Katie out of school because of pain. And I got very insistent with her doctors.

    Dr. John Wedge at Sick kids has seen about 10 cases of this, he probably has the most experience. He's a little gruff but he knows his stuff!
    Keeping weight off but also mobile is good, swimming is great. I would get a consult with dr. wedge.
  7. Lorrineperu

    Lorrineperu New Member

    I started a conversation with you Carolyn, it wouldn't let me give you my email address tho. My daughter has the very same thing and we are also in Toronto with her surgeries at Sick Kids. I wonder..

    Moderator is there a way to get her my email address? I would also love to connect with another family in the same situation.

    Our doctor at Sick Kids Carolyn is Dr. John W*. He's seen about 10 of these kids, its extremely rare so he's your best bet. Kind of a gruff guy but he knows his stuff big time!!
    Lasted edited by : Oct 5, 2014
  8. Jonty

    Jonty New Member


    Dear All

    My 11 year old was also diagnosed with Chondrolysis. It's been 3 months now that she has been on crutches and the doctor is not convincing. She was very active in soccer and also likes swimming. She is still doing a little bit of swimming though and will be starting with Physical therapy. Anyone out there with other suggestions?