My son was diagnosed with idiopathic chondrolysis

[Shaleah]

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

[shellyd67]

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.

[Shaleah]

He has been doing physical therapy for about six months. It has taken nine months and five different drs 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.

[shellyd67]

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 med 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

[Shaleah]

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

[InsaneCdn]

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".

[Candace]

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.

[shellyd67]

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

[Shaleah]

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

[gcc]

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.