The thermometer beeped as my husband and I waited in sickened anticipation… beep beep…two beeps are bad. That means the temperature is above 101. We looked together… 104 PANIC. What do we do?

This was our third month in a row with PFAPA. It was our first Thanksgiving with our son. He was only 10 months old, and he had an autoimmune disorder.

You may have a child with PFAPA, or maybe a child (or yourself) suffering from an autoimmune disorder. Or maybe you are just interested in learning more about what happens? You are familiar with some version of this story. The sick feeling in the pit of your stomach because you truly know there is something wrong with your child. You know it isn’t normal.

At that point in PFAPA for us, we were new to fevers – especially high ones. We did some pretty naive things, like fill the tub with lukewarm water and put our screaming child in it – to make no difference whatsoever. We dose him with ibuprofen and acetaminophen to get just a 2-degree drop in temperature for only 4 hours (of a medicine that is supposed to last 6-8 hours and eliminate a fever). But that 2-degree drop does put your mind at ease. We still do the meds.

What do you do?
You take your child to the pediatrician repeatedly right? You keep asking why the child doesn’t seem to have signs of illness but is clearly not normal or OK. They check your child over and send you away without a diagnosis. In our case, they only ever saw the fever, with swollen tonsils and mouth sores. They didn’t pay attention to the severity the frequency and the timing of the fevers.

After awhile we give up right? But it continues. For us, we just waited for 10 more months powering through on our own. We suffered through sleepless nights with a screaming infant. Nothing was stopping or getting easier. When he started walking at about 12 months and had his PFAPA fever we noticed he was limping and crying out in pain. He had joint pain too. His fevers were up to 105 during certain episodes and lasting for 5 days and were relentless. We needed answers.

Eventually, you will find someone to listen to you. You will get that referral to your specialist. You may take years on the path to get that diagnosis (it was a whole year of our son’s life). Unfortunately not every diagnosis has the great answer you hoped for, but some type of answer often offers peace of mind. In PFAPA, it’s a matter of helping to comfort your child and making it through each episode. You just hope that they grow out of if sooner rather than later.

What’s the difference between a PFAPA fever, and an illness fever?
Rarely do children with a regular illness have a fever longer than 3 days, viral, and if it is longer it is typically treated with antibiotics and then subsides. There is always a clear sign of illness in these children. A stuffy nose, cough, stomach problem.

A PFAPA fever ranges from 100-105 and is relentless for 4-6 days, and has no signs of illness. No stuffy nose, no cough, no stomach issues. Treatment with ibuprofen or acetaminophen barely lowers the temperature, and usually no more than 2 degrees. The medications only last 4 hours (supposed to last 6-8). PFAPA is not very responsive to medication.

So what’s the big deal with a fever? That’s it?
That’s the type of response and look we got from many people when we started rescheduling or not attending functions during a PFAPA episode.

His tonsils are so swollen it’s hard to understand him when he talks. He has, at least, three mouth sores plus sores on his tonsils. He has lower leg and hip pain, so severe, he doesn’t want to walk. There are times when he has to be carried to the bathroom (he is 5 years old). He has night terrors before and after an episode. He can’t eat and the medications upset his stomach sometimes causing vomiting. This happens for 5 plus days with recovery. He is awake most of the night for 2-3 nights of the episode. And his mood and behavior are altered. He’s miserable and angry. Wouldn’t you be?

Think of how your child is with a standard illness, then imagine it 200 times worse.

What can be done?
Occasionally a dose of prednisol can end an episode. But it has to be given a day before the episode begins, and if used too frequently can actually increase the episodes. If you don’t give it the day before the episode begins it won’t work. And that’s it – there is nothing more you can do. You do your best with home comfort and hang on during each episode.

Tips for Parents
* Take help when it’s offered. It’s not selfish to take a break. It will clear your mind and rejuvenate you to take better care of your child.
* Take shifts with your spouse or partner in caring for your child. Leaving it all to one parent 24 hours a day is overwhelming. Medication mistakes and more can happen. Having 2 rested parents is better than one that is running on 1 hour of sleep over a week.
* Still feeling overwhelmed? Take a break and step away. Leave your child to watch some TV, or rest in their bed and step away. You need to clear your mind to continue care. It’s necessary.

What do you do that helps with care? What condition does your child have?