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March 15-16 2024

A conversation with the mother of a PFAPA patient

Leonor, a six-year-old Portuguese girl who recently started primary school, began experiencing febrile episodes and refusal to eat when she was around 19 months old. Her mother kindly shared their family's experience dealing with her recurring fevers.

Leonor's mother recounts, "She always complained about mouth pain, making it very difficult for her to eat even her favorite cookies. The fever was consistently high, leaving her with little energy to do anything."

When asked about the duration of the fevers, Leonor's mother explains, "Initially, the fevers lasted about four to five days, but sometimes it persisted for a whole week, greatly impacting her daycare attendance. Both her father and I had to take days off work to care for her, especially since our closest family lived three hours away."

Navigating the uncertainty was challenging for the family. Leonor's mother reflects, "In the beginning, not knowing the cause was frustrating. We were constantly worried about her health. But with time, we learned to recognize the pattern of symptoms and focused on providing comfort and support during each episode."

Obtaining a diagnosis was a lengthy process. "Multiple doctors initially diagnosed her with infectious tonsillitis, leading to frequent antibiotic treatments that proved ineffective," Leonor's mother recalls. "It wasn't until a pediatrician in the emergency department noticed aphthous lesions in her mouth and swollen neck lymph nodes that PFAPA syndrome was considered. It was the first time we even heard about it. Steroids were recommended, and in the following episode we decided to try. It was like magic, really. It significantly reduced the duration of her fevers."

Managing Leonor's condition now involves a careful routine. "We provide pain relief and ensure she stays hydrated during episodes," Leonor's mother explains. "In severe cases, we use steroids, especially during school time."

When asked about alternative medications, Leonor's mother shares, "We were briefly advised to try colchicine during a time when the febrile episodes worsened, but it caused nausea and diarrhea. Thankfully, the frequency of episodes has now decreased to once every three to four months."

In closing, Leonor's mother emphasizes, "Patience, perseverance, and advocacy are crucial when dealing with PFAPA syndrome. It's challenging to witness your child suffer, and school attendance is impacted. Understanding and support from everyone involved are essential, not only from the school staff but also from everyone at the parents’ workplace”.

by Ricardo Craveiro da Costa- JIR CliPS, WG PFAPA/SURF


You liked that article? Interested in PFAPA?

Read this article other article from the same author :

"Understanding PFAPA Syndrome: A Brief Guide for Physicians"


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