PFAPA what?!?

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Imagine your child getting a 106 fever EVERY SINGLE MONTH.

Imagine it lasted FIVE days. Imagine the pediatrician telling you this is NORMAL and that kids get sick all the time! Imagine this going on for YEARS. Well, that was us. 

When Hawkins was about a year old he started getting regular fevers that would spike to 106 every month. At first I agreed with the doctor, it was probably just a virus. But month after month the fevers persisted and nothing helped them. Hawkins had no other symptoms but THE fever (he was too young to tell me if there was anything else going on). 

After about a year of no answers and continued fevers, we decided to change pediatricians. In the meantime, I started researching fevers in children. I came across PFAPA, which stands for Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis. See why we just call it PFAPA?! Here’s the official definition: It is a childhood syndrome that affects both boys and girls. It causes repeated episodes of fever, mouth sores, sore throat, and swollen lymph nodes. PFAPA usually starts in early childhood between ages 2 and 5. 

At our first appointment with our new doc I brought up PFAPA and she agreed that it sounded like something Hawkins may have. She referred us to a pediatric immunologist at Vanderbilt who specialized in PFAPA. While we were waiting for the appointment we started Hawkins on some natural supplements that others had found stopped the fevers in their children. Lo and behold, they worked! Hawkins' fevers stopped completely. I kept delaying the appointment to see if the fevers would come back, and they didn't, so I eventually cancelled it.

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Supplements

1 Tart Cherry

2 Vitamin D-3 Whole Foods Brand (no link available)

These supplements were a lifesaver. I’m sharing pictures of the products we used above in case you’re interested in them, too. Research has shown that many kids with PFAPA have low Vitamin D, and that supplementation can stop the fevers. We also added Tart Cherry extract which is anti-inflammatory. PFAPA is an inflammatory disease. The only downfall was that all the material I had read about these supplements said that eventually the fevers would come back and… after 2 ½ years of being fever free, they did.

After the fevers returned we decided to go ahead and see the pediatric immunologist at Vandy. When we arrived we came prepared with a fever journal and all of Hawkins’ records. I was crushed at the visit. The doctor dismissed his disease and said “it’s not life threatening, he’ll grow out of it eventually” and sent us on our way. If you’ve had your child have a 106 or higher fever every month for 5-7 days you know it’s devastating and life altering. 

Even though I was saddened by our visit I didn’t give up. I kept researching and found that Tagamet (Cimetidine) an over-the-counter antacid (I would suggest getting this from a physician. My husband is a doctor and I’m an RN, so we felt comfortable doing this without supervision, but we don’t recommend it) had positive results stopping fevers in some PFAPA kids. We decided to give it a go, and it worked! I was a little uncomfortable giving Hawkins a medication without talking to a doctor, so we decided to get a second opinion from a pediatric rheumatologist in Birmingham. Our experience with him was so much better! He saw lots of kids with PFAPA and had also seen good results with Tagamet. He said we were doing everything right and to stay the course. We’ve had some ups and downs with Tagamet so far, but we are hoping it continues to work! 

Update! Hawkins’ last flare on Cimetidine was so mild. His fever barely got over 100. We are hoping he’ll skip the next one all together!

We also had genetic testing done along the way which showed nothing else that could be causing the fevers. Experts say most kids will outgrow PFAPA around puberty and that often a tonsillectomy will cure it. We are considering a tonsillectomy if the meds stop working again and Hawkins doesn’t outgrow this soon.

If you have any questions about PFAPA please feel free to reach out to me!



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