
It was about two years of tracking fevers and cycles, forty fevers, and I cannot even tell you how many bottles of Motrin and Tylenol. Sleepless night were a given and he practically lived in our bed.

George’s PFAPA scared us. We didn’t know what it was. Our doctor didn’t know what it was. But then someone did. And although the treatment was pretty straightforward, Covid made it difficult.

One year ago today, George had surgery to “take his fevers out”. He remembers very little except eating jello at the surgery center, getting to decorate a super hero cape, and eating a chicken nugget when he got home. Or so I thought.

Today he asked me if his fevers were ever going to come back. He asked what IF they come back. I hadn’t realized that was something we worried about. He’s grown so strong and healthy since his surgery. He has a big personality. He plays hard and loves hard. He’s my cuddle bug. He comes into my room each morning to snuggle with me. He still wants to be held and sung to at night before bed. And he must say, “Mama. I love you.” A hundred times a day. And during all those times, he’s never once mentioned being concerned about his fevers returning.
So imagine my surprise when he asked after we told him it was his one year anniversary. I reassured him that the doctors took those fevers out and they were never coming back. But…what if? I think it myself sometimes. I would be devastated to see him as fragile as he once was. It broke my heart before and it would again if they returned.
But over a year fever free and we have to assume he is in remission. He has been released from regular visits to the pediatric rheumatologist. He had his last followup with the surgeon 6 months ago. As far as the doctors go, he’s cured. So I will continue to reassure him…and myself.
He is fine. He is healthy. He is thriving.


I know we have talked about this before. My daughter didn’t have pfapa, but might as well have because she had the periodic fevers and other symptoms as well. I can emphasize so much. It takes such a mental and physical toll on everyone. I get the fear though. I still have it. My daughter still remembers some of it (hers ended around age 4 and she’s 9.5 now) and she still asks about it. Unfortunately, through all the testing, we found out she has decreased functioning natural killer cells, so she continues to get sick A LOT. So just like when she was a kid, she keeps asking why she is sick all the time. Sigh.
Anyway, I am SO glad he is fever free!! What a relief it must be for you.
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I’m so sorry. I do think I remember this. I hope this winter has been kind to her.
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Unfortunately, it hasn’t. She’s had covid, the flu, a bad about of hives that bow seem to be semi chronic, and a number of unnamed viruses. Sigh.
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Oh no! Sending good thoughts for a healthy spring.
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It is so good to hear that George is thriving!
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Wow, thank you for sharing your story. I’ve never heard of pfapa. With two toddlers of my own, I think I can understand how scary it was and would be to consider the what ifs. Here’s to thriving! 🤎
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