Four years ago, in the early stages of the “two week pause”, my middle man kept getting sick. I mean—he had been in daycare since 10 weeks old and was always getting this bug or that. So being sick was normal. We had gotten used to the dreaded it’s just viral diagnosis. But it was pretty weird when we were literally never leaving the house that he kept getting sick.

Then the mild virus which caused a random low grade fever that was easily confused with teething progressed into OMG! This fever is SO high! Do I need to call an ambulance? I clearly remember the first time I saw a 105* temperature pop up on the thermometer. Aaron was working from home—as we had all started doing. I screamed for him as I carried George’s still body to the bathroom to run a tepid bath. I tried to get him to take some ibuprofen or acetaminophen but he just couldn’t do it.

How long had it been since I had last given it to him?  Was it too soon?  Did it even matter at this point?  

I called the doctor and they were stumped. In those early pandemic days, doctors had their nurses triaging over the phone. If you were lucky, maybe they would see you in parking lot or empty office. Not even kidding. Ours was treating every child as if they had a viral infection. You couldn’t even get a Covid test at that time—remember that? George had 4 fevers over the course of 10 weeks and they hadn’t seen us even one time.

I was a few weeks from giving birth to my youngest by this time. I was about to lose it on the triaging nurse if she said to just treat the symptoms again. But, luckily, she agreed that it was time for him to be seen by a physician. We went to the office all masked up. He definitely had inflammation in his lymph nodes. The doctor thought it might be best to run some bloodwork—on a hunch.

That bloodwork revealed some out of control inflammation that was highly abnormal. She followed her gut thinking maybe it could be something called Periodic Fever Adenitis Pharyngitis Aphthosis or PFAPA for short. She had never seen another patient with it but she had just read a journal article about it. There seemed to be a rise in the diagnosis of PFAPA due to the pandemic. It could no longer be just a virus and doctors started to investigate further on their repeat fever kids.

The pediatrician didn’t even know how to begin treatment as this was way out of her wheelhouse. She referred us to a pediatric infectious disease doctor to make sure we weren’t missing something. That doctor referred us to a pediatric rheumatologist. After some additional testing and bloodwork, it was confirmed. It took almost a year to get the official PFAPA diagnosis. During that time, George had an additional NINETEEN fever cycles.

They all started the same with deep, dark bags under his eyes that looked like he hadn’t slept in weeks. He would eat everything in sight for a few days as if he was a camel filling his hump. It was a good thing he did, because the next 5 days brought nothing but 105*+ fevers, sleep, and the occasional sip of water. But that was about it.

On his worst nights, I would draw up ibuprofen and acetaminophen syringes placing them on a plate on my nightstand. I would set a multitude of alarms and then label it with the coordinating medication for every few hours. He would sleep with us every 18 days for five nights straight. Every 180 minutes, my phone would announce it was time for him to be medicated. I would take and then diligently record his temperature in the dark while carefully giving him medicine in a dream state.

The routine repeated for another year. Then on March 4, 2022, he was scheduled for surgery. They removed his tonsils and adenoids which should have been done long before. Thank you, Covid, for preventing SO many “elective” surgeries.

We haven’t had a fever cycle since. I sometimes think he has had a feverless cycle. I can see faint under-eye circles. He will complain about joint pain or a headache. His appetite will pick up then mysteriously disappear. His sleep will deepen and he will be extra clingy. But the fever never comes. And for this we are grateful.

Tonight I asked George what he remembers about his fevers and surgery. He only remembers eating jello in recovery. As for the fevers, he remembers feeling bad. All the time. He remembers his body feeling yucky. He asked if the fevers would come back and I reassured him they wouldn’t.

But could they?  Maybe. But no sign of it. 

I’ve heard nightmare stories about diagnosis taking years and years and years. I’ve read about doctors refusing surgery due to lack of throat infections and insurance companies denying coverage. We are so fortunate for a doctor who thought outside the box. We are forever grateful for specialists who diagnosed and treated quickly.

He’s a new kid since the PFAPA remission. His language blossomed. His creativity soared. He grew FIVE full inches! He’s super smart. His favorite things to do are play with his brother and beloved babydoll, Ralph. He’s an artist and a gamer. He’s full of passion and sass.

And he’s healthy. He’s so healthy and so happy.