Today the world of PFAPA was colliding with the national conversation on vaccines in an unintentional way. Refreshingly, people did not start throwing out blanket statements on what other people should be doing regarding vaccines, we know better as we are all in this weird world together. One of the largest gathering places for parents of kids with PFAPA as well as a few adults who still suffer from PFAPA is on good ol' Facebook. I'm not sure if a more supportive environment could be found. Questions are asked and instantly have 5-10 if not more replies in minutes, even at 3AM as a parent is sitting up with their feverish child who is having yet another night terror or can't sleep due to the pain in their legs. But that's the monster of PFAPA; there are so many questions. Kids have joint pain, headaches, fevers, blisters, rashes, vomiting, bloody noses, hives, night terrors, swollen tonsils, sore throats, etc. on a consistent basis over and over and over again with no end in sight besides "many outgrow this in puberty." Symptoms vary, but many have commonalities when you start comparing them and yet we don't even know how to classify it. Is it a syndrome? Condition? What's the difference?
I'm not sure if the lack of knowledge is due to PFAPA not being necessarily dangerous so much as a huge disruption in a person's life or if it is simply that mysterious. In any way, PFAPA effects many lives to the point of being considered qualitatively damaging. Kids are not allowed in schools when they are fevering. Children who have fevers every 14 days that last for 5 days will miss a lot of school. Parents will miss a lot of work. More than many parents have lost their jobs due to the fact that their children cannot attend school consistently. Luckily, for some, there is a way to shove this syndrome into remission. Some have success with tart cherry juice and Vitamin D. Omega 3's seem to have a beneficial effect and some parents have reported success with chiropractor work. Many use anti-ulcer medication or steroids to limit the longevity of an episode only to bring the episodes closer together and fight with the decision to keep children on drugs constantly. It is hard to measure success when you have to argue (many for years) and find your way through darkness to a diagnosis. Our family found relief through surgery, a tonsil and adnoidectomy. It is still unknown why this surgery helps some, but in recent studies it shows that one year post surgery, 65% of PFAPA patients will be symptom free.
After a family has experienced months without episodes, the fear still lurks that this syndrome will spring back into their lives because that is exactly how it entered. For us, Oliver seemed to have the same cold that Austin did. Until two weeks later he had it again. And again. And again. Others have reported similar situations. A sibling had a virus or a cold and that was the "triggering" event. Others believe it was the body's response to some antibiotics. Some believe it was vaccines. Some way our children's immune systems were triggered and they have kept responding with reoccurring fevers and other symptoms. I still chart Oliver's fevers. He had a blister on his tongue two days ago. It could have been where he sipped something too hot or an aggravated taste bud, but it looked white and he could feel it, so it was charted. He had a series of bloody noses about a month ago. On Nov. 7th he had a fever that lasted about two days and for the next month I held my breath and kissed his forehead in an obsessive attempt to find a second fever that never came. Today Oliver had a stomach ache and I tried to sound like it wasn't a big deal as he declined a meal (which never happens) and I waited for the glassy eyes to appear (they didn't).
Our children are vaccinated. Phew. I said it. In our home town where only approx. 83% of kids are fully vaccinated, admitting that you have vaccinated your children can get a mixture of sympathy and indifferent looks, as if you are just a sheep that is not able to process all of the "new" studies that show vaccines are not necessary. We used an alternative schedule, but still, every vaccine has been injected into their little bodies and we are happy about it. It is no fun to be in the middle of a developing country and think about your kiddo needing medical care not knowing what the country's current status is on vaccine-preventable diseases. Oliver's PFAPA appeared in May, two months before his five year old booster shots would have been given to him. He went through surgery just after turning 5 and we have been fever free since. We decided to hold off on his boosters until he turns 6 and it is something that creeps into my mind every so often...I should look into that. Today, two people on the PFAPA group reported their kiddos getting booster shots and following it with a fever. They are staying up at night watching other symptoms. Taking note on body aches and researching if that is a common response to boosters. They can't relax as the fevers rage on and hold their breath to see if the Advil will work (it doesn't do much against a PFAPA fever) and the rest of the group waited with them. As our time to give Oliver his boosters come up over these next 6 months, we are perplexed on what to do. We believe in vaccines and herd immunity, and yet thinking about having the boosters and possibly "triggering" this syndrome (can it be triggered? we ask ourselves) is terrifying. Right now Oliver is protected 94% against the measles. By having the booster he would be protected 97%. Is that extra 3% worth the risk? IS there even a risk? Nobody knows. I tend to think of our family as healthy. We are the ones who can have the vaccines to participate in herd immunity for those who cannot have vaccines, but the question creeps into my mind, is Oliver somebody who needs to rely on herd immunity because he himself cannot have the booster? I don't know. I don't think there is a doctor out there who can answer that question.
As the national conversation around vaccines swirl around about who is right, who is educated, who is paying attention to studies, it is not always so black and white. We are one family of millions with strange syndromes and even more who know what they are dealing with. The question of how vaccines effect healthy kids is being hotly debated, but for those of us with "relatively" healthy kids, the question seems more confusing, scary, and murky. Listening to the voices screaming all over the Internet on what parents should be doing is giving me a headache and I am so happy that I have found a supportive group to help me sort out what we can do because our kiddos deserve the best of that.
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