It is entirely possible that I am being much too optimistic about something I found out today, but on the other hand maybe not.
Johannes was diagnosed with Periodic Fever Sydrome (PFAPA) back in december, and you can read about all that here and here. Meanwhile we’ve been trying our very best to manage the fevers, to keep Johannes healthy and comfortable, the usual stuff we all do for our children.
The one thing that has bothered me since our Pediatrician delivered the diagnosis is the frequency of repeat episodes. I began officially tracking the fevers and symptoms in September, but prior to that I do remember Johannes being sick every other week starting some time in the fall and ending in the spring. Over the Spring/Summer months I know he would get fevers as well, but not as often. So why?
In December I put Johannes on a mix of vitamins, minerals, probiotics, omega 3s. Since then he has had only 2 fevers, 30-31 days apart. Before that the episodes were coming every 12-14 days. Why the longer stretches now that Johannes is taking the vitamins?
I’ve been going over everything in my head for a while. Why better in summer vs winter? Why not as frequent when taking vitamins? The causes? The triggers?
It didn’t really make sense until I heard someone mention that perhaps Periodic Fever episodes are triggered by vitamin deficiencies. And that’s when the lightbulb went off for me.
What if a depleted level of vitamin D in Johannes’ system was triggering his episodes? It would make sense that in the summer he spends more time outdoors and gets more naturally occurring vitamin D than in the winter. It also makes sense that vitamin D is one of the supplements I give Johannes daily. I did some research to see if my theory was right and I came across this research study** by the International Journal of Pediatric Otorhinolaryngology which came to this exact same conclusion. The most critically important excerpt from which was this: “Deficient and insufficient vitamin D serum levels were found in most children with PFAPA syndrome, and hypovitaminosis D might be a significant risk factor for PFAPA flares. However, vitamin D supplementation seems to significantly reduce the typical PFAPA episodes and their duration, supporting the role of vitamin D as an immune-regulatory factor in this syndrome”.
Today Johannes is battling another fever episode. He is throwing up often, his fevers spike before the medicine we gave him has had a chance to work. He is tired and in pain. His legs and joints hurt and he doesn’t like to walk because of the pain. He is otherwise his bossy happy self, and his attitude is the most amazing thing to watch in all this.
Tomorrow I will double his dosage*** of vitamin D. I will juice with foods that are vitamin D heavy. I will do more research and become an expert in my son’s condition, because I am his biggest advocate.
** For anyone who wants to read the entire article you need to purchase a subscription.
***For anyone interested in the dosage or possible adverse effects of VitaminD on children and adults please refer to this article published by the Mayo Clinic.