There are many things that cause me apprehension when it comes to Scarlett’s weakened immune system. Respiratory season is one of my top three concerns and it can sometimes send me into panic mode. Scarlett’s initial lupus flare was triggered by a respiratory virus, which we later found out to be the Coronavirus. Many people with lupus experience their first big flare after being exposed to a bacterial infection or virus. Scarlett’s respiratory virus triggered her first serious flare which caused her to have diffuse alveolar hemorrhage over a two month span. Over two months of bleeding in her lungs… that is so crazy!
Scarlett is currently on mycophenolate, which surpresses her immune system and keeps it from overreacting and attacking itself. Mycophenolate replaced her chemotherapy. This medication is just one of the many reasons why she is so immunocompromised. Her nephrologist told me that if she can make it two years without being hospitalized he would consider taking her off it. I recently read a case study, although it was published in 2003, that correlated the use of mycophenolate and pulmonary hemorrhage in children. Research is limited, but the case concluded that mycophenolate improved the chance of a re-occurrence of pulmonary hemorrhage. However, the medication can ultimately lead to life threatening infection. She’s already at high risk of developing cancer because of her positive NRAS gene and mycophenolate increases that risk as well. I’m terrified of her getting an infection or cancer that she cannot recover from, but I’m also terrified she could have another pulmonary hemorrhage.
These past two months Scarlett has been sick off and on. Of course it is the season for germs. She has been on antibiotics multiple times and a round of steroids. She is now recovering from pneumonia. This last bout of pneumonia left me the most worried I have been in a long time. She lost too much weight and got down to 31lbs. She is already very petite and doesn’t have much reserve even though she usually has a good appetite, unless she is sick. This last week and a half she has definitely made a comeback. She has gained 3lbs in less than two weeks!
Scarlett has also missed a lot of preschool due to being sick. This week we kept her home one day because there was another child in the other preschool class that tested positive for influenza. We just can’t take that chance. We plan on sending Scarlett back to school next week. We are very relieved she’s getting better, but we still have a few more months of respiratory season to go. Not to mention we plan on travelling with her in March. Hopefully Scarlett will continue to bounce back from any infection that comes her way!
(Picture taken on 1/9/20. When you need to gain weight you can have ice cream anytime!)
My Child Has Lupus 