We would like to add a little update since last Thursday to let everyone know how things are going with Evelyn’s foot/knee. We have allowed her to “baby” it for the past week and the swelling has gone down significantly; however, the pain is still excruciating if she uses it at all and if it gets bumped. After hearing from the Pain Doctors that they are concerned it is not the Pain Syndrome (a.k.a. CRPS) we felt it would be best to expedite the process of getting her evaluated sooner rather than later, especially since it seemed the pain had worsened in the last several weeks. So, at the beginning of the week, Kevin brought her into the ER and they did an MRI without contrast, with a plan to use contrast at the end. Unfortunately, Ev was unable to finish the MRI to get the contrast study done. From what they did gather, Evelyn’s MRI showed a “change” compared to the MRI done in July, but other than that it was not very comprehensive. There was obvious effusion, or fluid buildup (hence the outward appearance of swelling), but no obvious tumor, infection, or injury. The rheumatologist from Seattle said on Monday that they would still like something with contrast so as to rule out infection or malignancy that may possibly be festering.
On Thursday (10/5), she had a bone scan that showed her knee and her foot bones were definitely inflamed. We finally received report today (Saturday 10/7). The radiologist does not think that the bone scan is consistent with Complex Regional Pain Syndrome, and wonders if Evelyn could be suffering from an autoimmune adolescent disease called Chronic Recurrent Multifocal Osteomyelitis (CRMO), which is in easy terms inflammation of multiple bones. Often, this disease is known to plague kids with long-term GI inflammation (go figure!) or skin psoriasis and can take years to diagnose. Evelyn’s pediatrician is passing this information on to the rheumatologist in Seattle again (they also have a radiologist who will be reading it on their end as well) and hopefully we can get a plan going forward. Usually, this inflammatory disease is a diagnosis of exclusion, meaning they must rule out infection of some sort before giving her a formal diagnosis, so we will wait until Monday to see if the rheumatologist would like to aspirate the bone or swelled tissue first or start some steroid injections as a trial run to see how she does. Thankfully, Evelyn has had IV ibuprofen (Toradol) going for the last several days and her inflammation has improved significantly. Unfortunately, it is not a long-term solution, so hopefully we can get a plan set in place quickly and bring her relief soon!