Finally a diagnosis! C.R.M.O.

Olivia had her 3rd biopsy last week, the results showed no histiocytes, nor any signs of infection, bacteria, fungus etc. Our oncologist and the team he consulted with suspected the lytic lesions were caused by Chronic Recurrent Multifocal Osteomylitis, a very rare disorder. He referred us to a CCMC rheumatologist, Dr. Zemel. After meeting with us, he consulted with Dr. Polly Ferguson, from Iowa, who specializes researching CRMO. When the oncologist mentioned CRMO, I knew just what he was talking about as I came across it on BoneTumor.org. It mentioned pustules on the hands and feet, which she has had in the past. Our pediatrician and I believed it was eczema...treated it with topical hydrocortisone...but who would have known it would lead to or be connected to this?

Today we went back to CCMC for another (2nd) pamidronate infusion. Dr. Parikh and gave us an update and said he was sure that is C.R.M.O. Compared to the 'differentials' we were faced with, this appears to be the best diagnosis we could have hoped for. It's an autoinflammatory disorder that affects 1 in a million, mostly girls around the age of 10. Dr. Zemel came in to speak with us as well.

Here's a list of things we feared it could have been: bacterial osteomyelitis, Ewing sarcoma, leukemia, lymphoma, neuroblastoma metastasis, eosinophilic granuloma, Langerhans cell histiocytosis or non Langerhans cell histiocytosis. 

The treatment for Chronic Recurrent Multifocal Osteomylitis is (for her) Pamidronate infusions (which we already started), non-steroidal anti-inflammatorys, or steroids. Dr. Zemel said she may not even need any more infusions because after the last one, the MRI showed a bit of improvement. She could take an oral biphosphonate. He wrote her a script for a strong NSAI and we're waiting for the insurance to approve the new prescription. They tylenol w/codiene knocks her out and makes her a little off balance etc.


The rheumatologist wants a 'bone scan' which differs from a full skeletal survey. It was explained to be like an 'MRI' but any altered, affected bone will 'glow' in the images. In the meantime she's a little tired/weak from the infusions but showing no signs of hypocalcemia, like last time.

Read more about Chronic Recurrent Multifocal Osteomylitis at Bonetumor.org