What’s true and what’s not with PFAPA?

I had a conversation today with someone about getting a diagnosis for PFAPA. I have worked on that many years ago myself, and have talked with many families who usually already have this diagnosis and it’s just one piece. It often helps the family finally feel like they have an answer, but it’s just a label. Sadly with that diagnosis not much else happens.

I haven’t been able to connect with a traditional practitioner or even a functional practitioner who makes this diagnosis and offers something more than prednisone to a family. I hope they are out there – and I would love to connect. But in the meantime – let me run through some myths/facts about PFAPA that the practitioners still share (despite the medical journals now detailing otherwise, and despite the practical side of my practice and theirs).

1. Your child will outgrow PFAPA/PFS (untrue)- perhaps at some point your child appears to stop cycling suddenly without any type of functional support. If so you made changes that you didn’t realize changed the internal environment for your child. It doesn’t go away magically at age 10. I have ADULT clients who have had this their ENTIRE lifetime. In addition, I have a 13-year-old child, who if he chooses not to maintain his nutrition and supplements will flare again. It didn’t just magically disappear when he was 10. No poof it’s suddenly gone. You CAN, however, learn to manage it and keep the episodes down or gone. I can help you learn how to do that for your child.

2. The only thing you can do is give your child prednisone to manage PFAPA/PFS (untrue). This does work in suppressing fevers, but that’s it – it doesn’t manage the flares, nor prevent them in the future. In fact, in some children, it can increase the frequency of the next flare.

3. Your child ONLY gets PFAPA fevers and nothing else (untrue). This is completely untrue. However, the trauma of those PFAPA flares makes it a challenge to look past that for regular childhood illness at times. This is another skill I help you with. It’s a challenge when your child is flaring with a PFAPA flare, and then gets sick shortly after. 

4. There is no other cause for immunity issues like PFAPA other than genetics (untrue). This isn’t the case. Even if you have genetics doesn’t mean the condition is active. So the fact that it’s active also means there were other influences. Over 80% of the immune system is inside the gut – thus – we have other things we can do to manage and help control immune system problems. I know this because this is what I do with my clients.

Overall in working with many PFAPA clients over the years, I can tell you that every single one has slightly different triggers, but every single one has also had different (sometimes intense) gut imbalances that need work to make a difference. Sometimes they struggle to detox (many do) and have had other exposures like mold, metals, and more. It’s not a simple picture, and it’s a lonely road when your kid keeps flaring monthly. Nutrients are key to helping the body detox and heal itself. Removing triggers is essential to stopping flares. Gut testing will likely be part of this picture as well so there isn’t anything missed in the journey to finding the right balance for your child.

Diagnosis for PFAPA is done by documenting the cycle, dates, and flare levels with fever. Your immunologist will run some blood work during a flare to look at some inflammatory markers to help confirm their diagnosis. If they aren’t sure which PFS the child has there might be other tests or genetic testing run to rule out specific PFS that have specific genetic bloodwork links. After the diagnosis is made, the offer will be prednisone to end flares when they start. 

Let’s not make that the end of the journey, but rather the time to decide what you can do AT HOME to manage this where you don’t even need to make a decision each month about meds and watch your child suffer. It’s work, and it’s change, but it’s worth it.

Need help? What to do? Let’s talk. I offer free consultations.