As I was posting our update last week, I thought "I hope I'm not 'jinxing' us by writing a positive update." Then I thought, "no, that's silly, we have to rejoice in whatever positive news we can get." Yeah, well, as has been the story of our lives over the past few years, we had another step back this week.
First, Ezra developed cold symptoms and it ends up that he has rhinovirus - the common cold. Of the viruses that can cause cold symptoms, rhinovirus is the least worrisome, but it can be difficult to clear for immune-compromised patients. Ezra had a really miserable (and nerve racking for us) 24 hours of feeling rotten. He is doing better now, although still plenty congested.
Complicating everything, Ezra's T cells have dropped by 50%. Ezra has about the same number of T cells that he had in December when they first appeared. We've lost 7 months of progress. Without enough T cells, Ezra remains at high risk for serious infections, and the longer he goes without T cells, the greater the risk. And now he has a cold. If he doesn't fight off the cold quickly, he will get a round of IVIG in hopes that will help him fight off the virus. His IgG has basically remained stable, but without enough T cells, his doctor is not sure he will be able to clear it quickly, and we don't want it to turn into a sinus infection or anything more problematic.
Given the T cell situation, his doctor is going faster on the steroid wean this week. Viruses can cause counts to drop, so they are going to keep a close eye on his counts to make sure that between the steroid decrease and the cold, things aren't getting out of control. If he does ok with the steroid wean, then we may move toward weaning the immunosuppressant, while keeping him on a low dose of steroids. All of this is in hopes of getting up his T cells while not letting the autoantibodies make trouble again. A delicate balance.
We are frustrated, to say the least. It feels like we can never stay in a forward direction for long. As always, please keep our little man in your prayers and thoughts.