We were recently in Fargo and saw Scarlett’s rheumatologist. I have to take a minute and rave about her doctors, especially her two main doctors that rotate seeing her. I used to work in surgery and now behavioral health. I feel comfortable interpreting most of her lab work as they come in, however I have to say immunology is not my specialty. Scarlett’s rheumatologist and nephrologist are her main doctors and has been absolutely amazing answering my questions and making sure I understand her disease process completely. I am also aware that I can sometimes become obsessive over every test that comes back. Her latest lab work has been reassuring. Her hemoglobin is up, which is very good as many with lupus suffer from anemia. Her platelets were low which could be the disease process or her medication. She also had her B and T cell counts done which were abnormal. One of the medications from the PICU that was crucial in saving her life, rituximab also robbed her from all her B cells. Her doctor has explained to me that these cells are responsible for making memory in her immune system. The good news is that they are higher than when she was in the PICU which hopefully means her immune system is trying to make memories. She is still very immunocompromised.
This winter Scarlett was sick a lot. In December she had a round of antibiotics and steroids for pneumonia. In January she had a double ear infection which would not go away. Over the next few months she required three different antibiotics to cure it. Every time she was placed back on an antibiotic I literally got heart palpitations. As we already know she is developing antibiotic resistance. My husband who usually gives Scarlett her morning medications missed one dose of her clarithromycin due to a miscommunication about how many days she had to be on it and I literally lost it. I yelled at him. I felt like a terrible parent and wife over ONE missed dose of an antibiotic. I cried as I felt like we were contributing to her resistance.
Scarlett is now scheduled to get PE tubes placed and her adenoids out soon. Her audiogram showed her ear drum movement is minimal meaning she probably still has fluid even after her infection has cleared. Hopefully this procedure will keep Scarlett from having to be on so many antibiotics in the future. We have to save her antibiotic susceptibility for when she really needs it. She has a large team of doctors including her rheumatologist, nephrologist, pulmonologist, primary, and now an ENT doctor. They all agree it’s the best for her with her compromised immune system.
We still plan on putting Scarlett in preschool next year where she will be exposed to more germs and viruses. Our kids go to a country school and right now there are only 13 kids in each preschool class which really is pretty minimal. Next year will be quite the test run, but I really do not want her pulled from school. Several other lupus families I now know of have had to home school their child due to them catching too many bugs at school. I really want Scarlett to have normal social experiences. I think her being able to go to a small school and having her big sister Stella there to help her clean her hands will be a big help. Hopefully her upcoming surgery will help eliminate her having to be on so many antibiotics and help keep her healthy. After all that is the main goal of all her doctors and us.
My Child Has Lupus 