Living with a Recurrent Fever
Imagine spending about 25% of your life bedridden with a raging fever, and no one knows what’s wrong with you. No matter what you do to stay healthy, a fever, accompanied by a terrible headache and sore throat, strikes you approximately every 4 weeks and puts you in bed for about a week. You make sure to eat all of your vegetables, you get enough sleep, you wash your hands religiously, get plenty of exercise, and take the probiotics the doctor gives you, but nothing helps. This is what life has been like for my 7 year old daughter, Hayley.
Just a Virus?
I can’t tell you exactly when this started, because it took awhile for us to figure out what was going on, but it was sometime around age 2. For a long time, we just kept thinking Hayley had a bad string of viruses. Our other children never caught any of them, however, and after awhile, we began to realize that all of her viruses were very similar. She never had a stomachache, never threw up, never had diarrhea, never had a cough or a runny nose—most of the common virus symptoms were always absent whenever Hayley got sick. Instead, her fever was always accompanied by a sore throat and a severe headache. It acted a lot like influenza or strep, and as a result, she was given countless flu and strep tests, which almost always came back negative.
I didn’t always take her to the doctor, even though she would run a high fever of 103 or better, because, after awhile, I got tired of being told, “It’s just a virus.” All of those co-pays added up, not to mention her ever growing fear of yet another finger prick or throat swab. We began to believe that the fever was perhaps her way of coping when she didn’t get enough sleep or just got worn down. It seemed that after she had a few days to essentially sleep it off, she was fine.
However, niggling in the backs our minds was the terrifying fear that something more was going on with our child. As a parent, when you start to be able to predict that your child will come down with a fever, you know something isn’t right.
I questioned the doctor several times. Is my child all right? Is her immune system compromised? If these are just viruses, why the regularity? Why don’t my other children ever catch any of them? The doctor continued to insist that Hayley was fine, that some children just have lower immune systems than others, and that she was just one of those children who got sick a lot. She was growing normally, her body was always able to bounce back after being sick, and she never developed any “serious” illnesses, so there was no reason to worry.
We tried to buy those explanations. We really did. Every time Hayley got well after having a fever, she would look and act so healthy, and we would breathe an inner sigh of relief. She’s better. It’s over. Perhaps the doctor is right. Then, a heavy feeling of dread would settle in when, a few weeks later, the fever would start all over again.
Missing Out On Life
By this time, I was quite confident that Hayley wasn’t contagious, but I still couldn’t bring her places when she had the fever. For one thing, she didn’t feel well enough to go out, but on top of that, other people would get offended. After all, they didn’t want their kids catching something, which was understandable. Hayley missed dance recitals, birthday parties, church activities, community events, and more. It was so disappointing for her every time she came down with the fever and had to miss yet another event that she had really been looking forward to. It was also terribly inconvenient for the family, because we would all have to stay home as well, if the event was happening while her daddy was at work. If the event happened outside working hours, one parent would bring the other children while the other parent stayed home with her. Thankfully, we homeschool, so we didn’t have to deal with the additional issue of missed school days.
Finally, a Diagnosis
This past summer, everything changed when we met with Dr. Ben Sweeney, a chiropractor, to implement the wellness plan, Maximized Living. When I described Hayley’s symptoms, he said, “This isn’t normal. No healthy child should be coming down with a fever every month.” Finally, we had been heard! Through his encouragement, we began to implement a rigorously healthy diet, as well as exercise and chiropractic adjustments. He also recommended a new doctor to us, who would be willing to treat Hayley in order to prevent illness from happening, rather than simply “fix” her when she got sick.
This new doctor was familiar with symptoms such as we described, but wanted to do more research before examining Hayley. When we did meet with her, she first did extensive bloodwork to rule out any other serious illnesses. When Hayley’s lab work all came back normal, she diagnosed Hayley with PFAPA (Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome). It was the longest name of a condition I had ever heard! I had to ask her to repeat it several times, then I finally gave up on being able to pronounce the majority of the words and simply clung to the initials.
What Is PFAPA?
PFAPA is a syndrome that mostly affects children, starting at age 2-4, and going away by the time they turn 10. It is characterized by a regularly occurring fever, which lasts approximately 3-7 days, and can be accompanied by mouth sores, headache, swollen lymph nodes in the neck, and a sore throat. The fevers occur every few weeks, often with such regularity that they can actually be predicted.
What Causes PFAPA?
No one knows. Researchers do know that PFAPA isn’t contagious, it isn’t genetic, and it isn’t an infection. Inflammation is somehow involved, but researchers aren’t sure why. For more information on PFAPA, click here.
A lot of children out there suffer with this, and a lot of parents are frustrated because they can’t get any answers. There is no cure for this condition, but there is a good chance that Hayley will outgrow it. Most children with PFAPA do. Around age 10, the space between fevers will usually lengthen until they completely stop occurring. As far as researchers can tell, there aren’t any long term effects from PFAPA, and it has no effect on growth or overall health. It is very inconvenient and uncomfortable, but it will hopefully go away in the next three years or so.
In the meantime, although we can’t take PFAPA away from Hayley, we’ve learned through our chiropractor and new doctor some things we can do for her. We can work to lessen the length, as well as the severity, of her symptoms. She takes several dietary supplements, and she is on a very strict, anti-inflammatory diet (Maximized Living). We make sure she gets plenty of sleep, and she sees the chiropractor regularly. Doing these things has resulted in a dramatic reduction of her symptoms. Before we started doing these things, she would run a fever of 103 or better for 3-7 days, which is actually the normal severity and length for children who suffer from this disorder. Since implementing changes like Maximized Living to Hayley’s life, however, we’ve seen a reduction in both the length and the severity of her fevers. They now last between 1-2 days, and her fever hovers right at 100, usually having one short spike up to 102 just before it ends. Managing her PFAPA is possible, but it isn’t always easy. It takes discipline and effort to manage the supplements, chiropractor visits, and strict dietary needs. It is worth it, though, for her to spend less time in bed, and to get to enjoy more of her childhood.
If you have a child whom you suspect might have PFAPA, I recommend finding a doctor, preferably a pediatric rheumatologist, who will listen to you and help you make this condition more manageable for your child and your family. I also recommend checking out Maximized Living. Implementing this wellness program has made a world of difference, for Hayley, and for our entire family.