I am a mother. I am a mother of a sick child. I am a mother of a sick child with a very rare auto-inflammatory condition known as PFAPA.
The last few months has been cause for me (and my husband) to do some pretty heavy thinking about our lives, our future, and what we value. Our oldest son Mason just turned three years old. He’s a bright, enthusiastic but sometimes shy little boy. He is a lover of cars, books, puzzles and of course mama cuddles. We have recently been told that this beautiful, kind, and energetic boy has to face a decade or more of troubling symptoms from a rare (one in a million) disease that has no cure and some frightening treatments.
It is hard enough for parents to watch their child go through illnesses like a cold or the flu, it’s even harder when the illness comes almost like clockwork. Every three to six weeks our big boy comes down with a handful of symptoms; some we are just realizing are related to PFAPA. The main culprit is high fever around the clock for about a week with side effects of throwing up, joint pain, stomach pain, mouth ulcers etc. The new reality is about temperature checking and dose monitoring and trying all foods under the sun to get some calories into his tiny belly for the week that he is ill.
Then it passes, and he goes back to being a happy-go-lucky, sometimes drive-me-crazy three-year-old. This is followed by a few weeks of calm then me hovering, counting days, constantly asking him how he’s feeling, taking temperatures at the slightest inclination of fever and like many with this illness, making notes like some mom secret agent.
His diagnosis is not 100% because there is no proof positive, pee-on-a-stick test for PFAPA. We hope that with yet another pending specialist appointment some time in 2013 we will get the genetic testing to rule out some of the other scarier periodic fever syndromes. Then he will be left with PFAPA, which he has a good chance of outgrowing before he becomes an adult.
How do you explain to a three-year-old that this is his new reality, that this is his life, that this will possibly define the way he recalls his childhood? How do you give him the confidence to get through yet another new doctor or even more tests or scary nasty tasting or invasive treatments? How strange is it that we are on a first name basis with the pharmacist and that I can email his doctors.
This isn’t the life we choose for us, for him, but it is none the less what is in front of us. One day at a time. It’s a cliché but it is how we have to live right now. Hoping (and praying for those that do) that his next episode will be his last and that this will be but a paragraph in the story of his life.