The last few weeks have been a whirlwind of fear, anxiety, research, questions and more fear. A recurring swelling on our 8 year old daughter’s clavicle turned out not to be related to an incident on a trampoline two years ago. After repeated visits to doctors, who assured us first that it was the bone healing from a fracture, then that it was sternoclavicular joint sprain, we saw our doctor again in the middle of a flare up of her pain, just so he knew what was happening and to see if there was a more effective pain medication we could give her. She was having trouble sleeping, not able to participate in gym class and obviously in a great deal of pain. This time the doctor knew there was something wrong and sent us for x-rays again. When we got called to go in the next day, I was a little alarmed that it was so soon, but expected to be told that the x-ray had shown nothing and that they needed to do some other tests or scans. We met at the doctor’s office and were both stunned to be told that the news was not good. There was an abnormal growth on her clavicle and we needed to prepare ourselves for a very challenging few months of trips to Children’s Hospital. The upshot was that the doctor feared it was some kind of bone cancer and that the signs had been missed. He did not think it was infection.
Once the initial shock passed, I started researching infections of the bone, rather than focusing on the worst case scenario. There would be time enough for that later, but I think I needed to fill my head with something other than thoughts of cancer, chemotherapy and radiation. I never for a moment stopped thinking about what was happening, but the intellectual challenge of reading academic medical journals and research papers and learning new terminology helped me handle the situation. I came across a condition/disorder/disease that seemed to match up well with Philippa’s symptoms. A CT scan and full skeletal bone scan suggested that we were on the right track. The phrase used was ‘clavicular cortical hyperostosis’, which I found in the literature I had been reading. Pip has a ‘mixed sclerotic and lytic expansile lesion with some erosion of the clavicular head at the sternoclavicular joint’. For whatever reason, new layers of bone are being formed and the bone is expanding.
Yesterday we visited the orthopaedics specialist at Children’s Hospital in Vancouver. Whilst the initial concern was that it could be a malignancy, the specialist confirmed that she has a relatively rare disorder/condition known as Chronic Recurrent Multifocal Osteomyelitis. It is also know as Chronic Non-bacterial Osteomyelitis, along with a few other terms. The doctor admitted that it is rather embarrassing that they know so little about it.
Although biopsies are often done to rule out other issues, the specialist considers them to cause unnecessary suffering without adding to the knowledge about the condition. Unfortunately, the doctors don’t know definitively what causes it, how long it will last, whether it will appear elsewhere, when she will have another flare up or if the bone will fully remodel over time. They don’t know whether it is auto-immune or auto-inflammatory in nature. There is no cure, but she is responding well to the medication and will go for another check-up and more scans in two months. In the meantime, she will resume the activities of any other nine year old.
They do know that it is a self-limiting condition that can have a duration of 2-25 years. Some people will only ever have one bone affected, for others it will appear at multiple sites (multifocal). Philippa’s clavicle is the only bone affected at present. It is a disease of childhood and affects girls far more often than boys. The pain can be severe, but then it subsides for a few weeks before flaring up again.
All through this, Philippa has been her normal, happy, healthy self. She endured hours of scans without complaint and was very matter-of-fact about spending her birthday making a trip to the hospital. Now that we know it will be a couple of months before her next scans, she is excited to be getting her ears pierced, something she has been looking forward to for years! All things considered, this is the best possible outcome and our minds are much more at ease now that we know more or less what is happening.
If anyone is interested in learning more about it, I will add links to some of the articles.
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