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Living with a Recurrent Fever

Updated on December 23, 2011

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.

Our Solutions

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.

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      Brianna 21 months ago

      Daleamy- How is your daughter doing now? Has she grown out of it? There is a facebook page Alternative Therapy for PFAPA and Periodic Fever Syndromes, it would be awesome if you were willing to visit it and share some of your experience and insight with those of us who are desperately seeking answer. I know you don't have answers but every bit of insight helps. Thanks for your article! Hope your daughter is doing well!

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      sally 2 years ago

      My child has PFAPA and had over 33 episodes, er visits, extensive Doctors visits and a hospitalization before we got a diagnosis. She will be getting a T & A, because her one tonsil is so big it obstructs her air passages. T & A works in about 80% of the cases. As for PFAPA not being genetic everything I have read points to it being genetic. Unfortunately, it's not a "sexy "enough disease to warrant medical research to make a determination one way or the other.

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      Jen 3 years ago

      We JUST got this diagnosis after a story similar to yours! I have known for a long time that there has to be something more! I finally got the attention of a new pediatrician and we got to go see rheumatology!

    • profile image

      debbig 4 years ago

      My son is party15 years old and has never had a diagnosis. It all began when he was 7. He has gone 10 months without a fever and now it is back again. I feel so helpless and overwhelmed.

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      Seana 4 years ago

      My 19 month old son has also been diagnosed with PFAPA. We are currently trying several medications to help him with his fever episodes, but I would like more information on diet and supplements to help prevent or lessen his fevers if this is working for anyone out there. Any help or results you have experienced is very much appreciated. :)

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      Dayna 4 years ago

      While reading this, it was like reading the story of both of my children. My 2 year old has been having "a virus" they say since last June. Every 4-6 weeks it occurs. She is sick right now with let's see "a cold/virus/pharyngitis/tonsillitis (they've called it 4 different things since I called today due to being unable to get her high fever down. We took her to Vanderbilt after persistent demands that something happen because this was not normal in our eyes. The PFAPA was brought up but she also has cough and runny nose with hers, so we are still in the dark. However, our 6 year old seemed more likely to have the PFAPA. He had his tonsils out in January, and so far we have only seen a sinus infection since then. The tonsillectomy was after 4 years of this so called "virus" and an adnectomy when he was 3. It helps to hear other's stories so that you don't feel so alone because no one else seems to understand what you mean when you say your children are sick every month, and when both of them take turns every month it leaves you with 2 weeks out of each month with no sickness.

      It gets old hearing your family, friends, and complete strangers tell you that it's normal for kids to get sick frequently and that they are just susceptible for everything that goes around when they are young. Unless you are living it, you do not understand it.

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      Jen 4 years ago

      We've just discovered that my daughter has this. We already eat a very healthy diet, no sugar, organic, etc. We are looking into chiropractic. I'm curious what supplements you are using. Thanks, and best of luck to you.

    • daleamy profile image
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      daleamy 5 years ago from Spring Hill, TN

      That's certainly a consideration, although from what I've read, this solution helps some children, but not others. So far, the natural lifestyle has helped her a great deal, but taking out the tonsils is always a possiblity should our current approach fail to help her.

      Thanks for your comment!

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      chrisarm 5 years ago

      I have a son who suffered from PFAPA for many years before we got a diagnosis. There is a fairly simple way to take away the symptoms and while I understand wanting to do holistic medicine and naturopathy but taking out the tonsils and adnoids is almost an instant relief t the child. We did that for my son 4 years ago and he stopped the fevers immediately. Please consider that as an answer for your daughter, it will indeed change her life and get her back into a normal life.

    • daleamy profile image
      Author

      daleamy 5 years ago from Spring Hill, TN

      Thanks, Lee! Our new doctor is very unique--she totally supports natural remedies and has recommended natural immume system boosting supplements. I'm so thankful for this! I will check out the products you use as well.

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      Leokadia Durmaj 5 years ago

      Hi Amy, I believe Robert has told you about me a little. I have read your story and I can understand that all you want is for your child to be healthy and enjoy her childhood. It is frustrating when doctors do not know how to treat a health problem. I found this after my immune system broke down following my cancer. You see I refused Chemo and radiation which was not heard of in my situation. I should not be here, especially seven years later. What I chose was products to use to improve my immune system, I am a firm believer that if your body is healthy then it can overcome whatever viruses or flu's even cancer you may get. I live in Australia and we have a company that make wonderful products to help the body heal and improve the immune system. The company is called Rochway, you can go on the net and you can read about their products. I take four of their liquid products. Robert gave you my private email you can get in touch with me anytime. Merry Christmas to you and yours, Lee

    • daleamy profile image
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      daleamy 5 years ago from Spring Hill, TN

      Thanks, Roberthewettsr! I will definitely contact her!

    • ROBERTHEWETTSR profile image

      rOBERT hEWETT SR. 5 years ago from Louisville, Kentucky

      What a terrible ordeal for all of you. I hope your hub gets read all over the world. I am going to place a link on Facebook for you. You might email Lee Durmaj (you will see her on my hubpages. You can send your email to me and I will forward it to her. She went through a terrible 6 month immune breakdown and found relief in a natural herbal ointment which she can tell you about. Read her two hubs on her immune system breakdown and the responses to her, who knows maybe there is help for you and your daughter. God Bless all of you and I hope your daughter continues her improvement. Robert