Child with PFAPA: UPDATE PAGE 2

Oh wow. It’s extremely rare to see someone else going through PFAPA with a little one.

My daughter had PFAPA - maybe still has - starting at age two. Her pediatrician kept telling us that her once a month fevers were viral infections from daycare. No matter what we said, she kept insisting it was viral.

Then covid hit and we quarantined and isolated like all the other morons. But the fevers kept coming. Routinely. Every 21.5 days on average. A random 104+ temperature, white spots in the throat. That was about it for symptoms. They’d last 24-36 hours and then be gone.

We finally caught the pediatrician’s ear after months of being home, not at daycare, not being around others and still getting fevers.

We were offered a referral to a pediatric rheumatologist or a pediatric immunologist at Children’s Hospital. Our pediatrician recommended the immunologist because he’s some world renowned guy. He went through a series of tests with my daughter and diagnosed PFAPA.

He offered a high level steroid, single dose, to manage fevers as they occurred. Once she hit the high fever spike, dose the steroid. It knocked out the fever but also had the opposite effect by sending her temp really low. She would be lethargic, clammy, pale with a 96 temp.

He offered a different drug for management as well. I don’t remember the name. I just remember reading about it and wanting a different option. We consulted with an ENT about surgery. The ENT said he could pretty much guarantee - in his opinion - that the PFAPA would go away after removing tonsils and adenoids. We decided to wait on surgery to see if other options could work.

We dealt with fevers from 2 to around 4, missing tons of work, dealing with a pathetic kid every three weeks, all on top of the regular illnesses kids get. Having super high fever spikes in the middle of the covid craze was absolutely ridiculous.

But we were able to find an alternative solution after doing some research. It turns out that kids with PFAPA often have insufficient vitamin D levels, which we confirmed with blood work with Dr Atkinson. He suggested we try a vitamin D supplement and see what happens.

Her fevers stopped immediately.

We haven’t had one fever spike since.

Two years of pretty much on the money 104+ fever spikes and suddenly they were gone.

I’m not saying that will be a cure for you, but it worked for our daughter. Dr Atkinson also told us on a follow up that he was suggesting vitamin D supplementation to other families with PFAPA after our experience.

Here’s another study on the effects of vitamin D for PFAPA.

Thanks for this response. It was one of the things we are going to try.

Who was the rheumatologist and would you recommend them?

Got it. One more question if you don’t mind, how long did it take for you to see a difference with vitamin d, and do you have a type you prefer?

No kids on my end, but I hope it works out. Kind of odd to find useful medical advice on TD. Out of curiosity, let us know if it works out.

Chicken needs a "Medical Advice" board. Geez, could you imagine?

quote:

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But we were able to find an alternative solution after doing some research. It turns out that kids with PFAPA often have insufficient vitamin D levels, which we confirmed with blood work with Dr Atkinson. He suggested we try a vitamin D supplement and see what happens. Her fevers stopped immediately.

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I’m pissed off for you that it took that long for someone to recommend something so simple

Jocko Vitamin D is a 360 softgel bottle for under $20.

I am really grateful you shared this with me. Seriously, it’s been hard on this poor kid and you’ve given me a little hope.

The owner of the company I worked at called for a 15 minute meeting to "end acronyms". I agree. So many people use acronyms like DFNWNOONCNLWLCPWIO. Thinking everyone knows what they're saying, but no one does.

I suffer from CRS.
What was the OP saying?