Ever noticed an odd fever pattern with your child? Do they get unusually high fevers for more than 3 days? Is it so predictable you are planning around it?
What is PFAPA?
This is a (possibly) rare periodic fever condition (Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome.) It causes high fevers, mouth sores, very swollen tonsils, achy joints, and sometimes stomach upset. It is not caused by a virus or bacteria. It is not an infection. It is an autoimmune disorder.
My son has PFAPA. Parker’s immune system is fighting against itself and his own body. The fever is a result of an inflammatory immune process happening in his body. The other symptoms are also part of that process.
This happens to Parker every 23 days and lasts for 5 whole days. Sometimes fewer days, sometimes more days between episodes, but always lasts five days. It’s almost always to the exact day of the month every time. It is calendar predictable.
Doctors believe most children outgrow the condition around the age of 10. Most don’t develop it until around age 2, but I guess Parker was just “the lucky one,” beginning at 8 months old.
A Glimpse of this Disease Over the Years
As an infant, when the fever episode began he would wake up at 11 p.m. and cry almost non-stop until 4 a.m. My husband and I took overnight shifts to care for him. We weren’t aware of more symptoms other than the mouth sores, his swollen tonsils and the fever back then. He was un-diagnosed until he was 16 months old.
We called it “his fever” and we still do at home. He barely eats for three of the five days the fever lasts. Medication barely touches the fever. But when the fever is 105.6 you try everything you can to bring that down. Rotations of acetaminophen and ibuprofen every four hours brings down the fever by about 2 or 3 degrees for about 3.5 hours. At least, it’s less scary.
As he aged and began walking we noticed a limp. He would scream and writhe in pain on the floor during, and a few days following an episode. We assumed he had joint pain. When he started communicating at 2 years old, we were correct. He had joint pain. So much pain it was difficult for him to walk. Even today, the pain can get so bad during an episode we have to carry him to the bathroom.
His throat will be so swollen you can hear it when he speaks. His sores are so painful he doesn’t want to eat. Of course taking medication and eating no food, gives him an upset stomach.
Do you think something is wrong with your child?
If you have been experiencing unidentified symptoms with your child and you are seeking an answer, you are not alone. We searched for an answer to Parker’s condition for 8 months. We worked very hard to track his symptoms and search for answers regarding his condition. We used specific tools and organizational systems to help us get a referral to get a correct diagnosis for him.
You are in the right place if you are seeking answers and need some tools to help you get them. My book How To Get a Diagnosis contains all the tools I used to get an answer for myself (lupus), and Parker for PFAPA. Our research hub also offers health information about different body systems and conditions often associated with them. These resources can help parents and their children, or an adult family member searching for answers. There is nothing scarier than knowing something is wrong with your child, have no diagnosis and nobody listening to you.
This site’s mission is to get parents organized, educated, and tracking their child’s condition. The ultimate goal is to get doctors to listen to them.
We plan to go beyond that as well. We want to offer a support system for parents and individuals. A place to find other parents feeling the same way you are. A place to find out what works for other people and how they got results. A place to know you are not alone.
Coming soon! PFAPA – A resource guide for parents with PFAPA kids and other periodic fever conditions.