Raelee Takes a Turn- Lupus 2020

Raelee has been experiencing so many random symptoms beginning in late May, early June. It started with swelling in her hands and ankles. Then, just a few days before we left for the lake, she took a run in the neighborhood and seriously struggled the whole time. She complained of rapid heart rate and trouble catching her breath. By this point, due to swelling, she had been to the doctor and CBC was ran, but normal. She had also been in for a sports physical. At that point in mid June she had experienced the swollen joints. Upon personal research, I discovered that swelling could have been a result of her acne medication, minocycline. Discontinued the medicine, naturally, but she continued to have swelling. She felt badly while we were at he lake during the 4th, and just wasn’t herself. She had taken a week off from running. When we returned she woke up the following Sat morning with a bad headache and was running a 104 fever. I took her to Fast Pace where of course they tested her for strep and COVID,  given the circumstances. Both were negative. Once again, she went into her pediatrician two additional times for lab work yet everything was negative. Ultimately, we went to the pediatrician one more time on July 21 and Dr Lewis suggested admission to Kosair. We went home, took our time packing bags, and headed to the ER. She had a fever when we arrived. They ran a million more tests including a nose swab for COVID a second time. This time, her labs were off and they admitted her. She stayed 4 nights, 5 days on the 5th floor. She was in isolation for 3 days as adenovirus came back positive and we were awaiting results of the second COVID test. Finally, a diagnosis by rheumatologist, Dr. Schmidt, came in. She suspected she had drug induced lupus. Immediately, they ran 3 doses of IV steroids. She was sent home with prednisone for 6 days, naproxen, and a strict iron vitamin regimen due to anemia caused by the lupus. She is definitely feeling better these days. However, she did have to be put on a second round of oral steroids after her 2.5 week follow up appointment. We go back in mid September and hope her levels continue to improve. As of now, her ESR, CRP and Ferratin levels are still elevated, but no other labs are. These levels, while elevated, are declining, which is a positive sign.  

This goes down as this momma’s  scariest time of her life.