RSV

Annie has had a rather rough month since coming off her year-long treatment of antibiotics for her spinal fusion infection.  The GI issues have continued, although the infectious disease doctors believe it could take 3-4 weeks for her GI tract to get regulated again.  Our GI doctor suspects a possible ulcerative colitis flare-up and has suggested doing a colonoscopy for a definite diagnosis, but we requested waiting the 3-4 weeks as suggested by the ID doctor to see what happens naturally if we just give Annie some more time.

In the meantime, Annie developed a cold right after going off the antibiotics.  She missed several days of school, and then finally started feeling better enough to return to school for just 2 days before she became very ill with high fevers.  We got her in to the doctor who tested her for a UTI, strep throat, as well as the flu and other respiratory viruses.  We got results that night that she has RSV!

RSV is very dangerous in babies and the elderly as well as medically fragile people, like Annie.  Most Aicardi girls who develop RSV are hospitalized and often develop pneumonia.  RSV can last 2 weeks or more, but after just one week of Annie having RSV, we were concerned that her high fevers were persisting, and that she was becoming more lethargic.  Her seizures also become much worse when she's ill.  Although she's never had pneumonia, we began to be worried that she might be developing it, despite all the suctioning we've been doing.  So we took her back to the doctor for a chest x-ray, and fortunately, her O2 sats were at 100%, she sounded clear, and her chest x-ray was clear! Although Annie's cough hasn't sounded very productive lately, it must still be strong enough to be protecting her lungs, which we are extremely grateful for.

Annie is still sick with RSV, but her fevers are not quite as high as they originally were and her congestion seems to have improved just slightly.  She hasn't quite turned the corner yet, but I think she's starting to peek around that corner.  As for her GI issues, they have maybe improved just slightly, but it's hard to say.  Some days we feel optimistic and other days we strongly believe she has a UC flare-up.  However, now that she has RSV, she won't be allowed general anesthesia for the colonoscopy for 4-6 weeks after she's recovered from RSV.  So hopefully she'll turn the corner on the RSV soon and the GI issues will possibly resolve themselves with a little more time.