Scared for Sarah

A couple of weeks ago, we had a scary few days. Sarah started complaining about swelling in her feet. I didn't pay much attention for a day or so until she showed them to me the second night. Her poor little ankles were gone. She had a leg that just turned into a foot...no ankle bones, no curves, just swelling from her knee to her toes. This is one of the "watch for" symptoms of her PLE. There wasn't any swelling in her toes, her fingers, or her face, so we just thought we'd "watch" it for a few days. By the 4th day, she was still very swollen and uncomfortable, and the swelling didn't seem to get any better overnight or when she wasn't on her feet. So, I called her doctor in Salt Lake and he ordered labs to be done that day. I was very antsy (and so was Steve) to know the results from the blood work, but had to wait til around noon the next day before we knew anything. Her albumen level (the only one I could remember what it was supposed to be at) was down to 2.6. It was at 3.8 last time she had labs done, and the doctor wants her around 4.0. (Normal...for a "normal" person...is 4.5 to 6, I think.) Anyway, when she was soooo sick a couple of years ago with her PLE, her albumen levels dropped clear to 1.8 or something like that. When I heard that number, I was immediately overcome with fear that we were headed down a road I didn't want to travel...and with only 3 months left of high school. The fear caused by memories of that time period threatened to choke the logic and reality right out of me. After a period of being held tight by Steve, and some tears and fears shared with him, I calmed down and decided my smart, level-headed husband was right...that we needed to wait til we talked to the doctor before we panicked. The next day was Friday, and I still hadn't heard from him. Worrying that we'd have to go a whole weekend without any action, and seeing that the swelling was not getting any better, I called back to Primary Children's and left a sort-of-frantic message on the voice mail. Within an hour, I had a call from the nurse and then a call from her doctor. He said that although the albumen and total protein numbers were lower, they were not horrible, and since she didn't have any of the other symptoms — overall swelling, vomiting, diarrhea — we'd just treat the symptom and hope it takes care of itself. He had us give her an extra dose of lasix (diuretic) that she's already taking two of each day to see if the swelling would go away. He also said that infection or illness on her can affect the careful balance in her body and cause a flare-up of her PLE. (She has had several viruses and two sinus infections in the last two months.) By the next day...the VERY next day, her ankles were almost normal again, and have been fine since. We kept her on her extra lasix for a week, and when we took it away...everything was okay. Just like that, another sweet miracle and answered prayers were ours. She said to me the other day, "Mom, I've never been so grateful for my skinny chicken legs as I am now." I wish I could express how very grateful I am for them, too.