May 12, 2020 / Rheumatology

Share Your Story: A Special Bond

Meet Addison, a patient seen by our Rheumatology experts. Learn more about her journey below.

Blog written by Addison's mom, Laurie of Leander, TX.

At just 5 years old, Addison fell in love with cheerleading. She was fortunate to find a sport that was a great blend of her natural flexibility and her love of performing. In 2016, Addison started complaining of a sore ankle. Initially, we thought her ankle was sprained and after several weeks of it still bothering her, we took Addison to an orthopedic doctor. This doctor noticed an area of concern on an X-ray and sent us for additional imaging. Those additional tests found a problem at the base of her right tibia, close to her growth plate. 
We were then referred to a doctor in Dallas. After an initial visit, we began working with an infectious disease doctor who diagnosed Addison with osteomyelitis, a rare infection of the bone. After several rounds of antibiotics, the osteomyelitis never resolved itself and unfortunately the pain was keeping her from cheering. Addison was forced the make the heartbreaking decision to sit out of cheering for a year, so she could focus on her leg healing. In June of 2016, Addison underwent a bone debridement in the hopes of cleaning out the active osteomyelitis (infection) and to pack the bone with pellets that would help the bone heal. The debridement cultures did not yield any growth results, so we were excited to start focusing on Addison's healing.  
Unfortunately, in October of 2017, Addison's healing took a turn for the worse when she started to experience pain again. A trip back to the doctor revealed that the osteomyelitis had returned. We were then referred to the Rheumatology clinic at Scottish Rite for Children where Addison was able to see Dr. Nassi and was diagnosed with chronic reoccurring multifocal osteomyelitis (CRMO). Addison was disappointed and sad to hear her painful issue was back and cheering may not be something that she would ever be able to do again. As soon as we met with Dr. Nassi, we felt at ease. She has several patients with CRMO and once their disease goes into remission, they are able to return to activities they love. The Rheumatology team helped us understand that CRMO is an autoimmune disease and is caused because the body attacks itself, creating lesions in the bone. 
The first treatment plan provided almost immediate relief. Addison responded so well to the medication that she was able to try out for the local Austin competitive cheer team. She was thrilled to be on the road to healing and ready to regain all of her tumbling and flying skills. Unfortunately, about a year later, she started to have pain again in her ankle. 
A quick trip to Scottish Rite confirmed the CRMO was active and several lesions were found on the bone at the base of the tibia. Defined as an active flare, Addison was in a lot of pain and needed to refrain from cheering until the pain and lesions were under control. In order to help her body go into remission, Addison had to give herself weekly shots of two different immune suppressant drugs. This helped her body stop attacking itself and causing the bone lesions. We were incredibly thankful that there was another medication available that could help Addison. 
The team at Scottish Rite was amazing in helping our family adjust. In addition to the wonderful medical team that helped educate us on how to prepare and self-administer the shots, there was a Child Life specialist and psychologist that helped Addison deal with her diagnosis.  
Scottish Rite is like our extended family! Everyone that we have ever interacted with takes such great care of our daughter and our entire family. Recently, Addison was experiencing some adjustment issues with a new medicine. The Rheumatology clinic was able to work her in and Dr. Nassi even rearranged her schedule so she could personally check on Addison.

Dr. Nassi and Addison have a special connection and on this occasion, that bond was cemented.  


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