PFAPA Syndrome | Our Family’s Story

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Today I want to share our pfapa syndrome story. A diagnosis that as weird as it may sound, I was thankful to receive.

I’m sharing because it’s a huge part of our every day life, and because I want other moms who are dealing with the same diagnosis to know they’re not alone.

It took us two long years to get any answers. The not knowing made it worse. When you don’t know what you’re dealing with, fear creeps in and takes hostage every one of your thoughts. When your baby or little one keeps getting sick and no doctor can give you an answer or reason for it you start to panic and imagine the worst.

At least that’s how I felt. Nobody around me understood the kind of fear I was living in. Not even my husband.

I would cry out to the Lord in despair night after night during episodes. Pleading to Him to heal my baby or to give me the faith needed to get through what I was sure was going to be a cancer diagnosis.

But let me start at the beginning.

First PFAPA Episode

The very first time our little boy experienced a PFAPA syndrome episode was when he was only twelve weeks old.

It was a very hot July weekend right in the middle of the 2020 Covid-19 shutdowns.

I called the pediatrician’s after hours line in a panic. After an hour long wait for a call back from the on call nurse, she advised me to give him infants Tylenol and to call back Monday morning to make an appointment and bring him in to be seen by the doctor.

That turned out to be one of the longest weekends of my life. I couldn’t wait for Monday to get here fast enough so I could take him in. His fever got to 103.5 degrees that weekend. I gave him infants Tylenol, prayed, and held my tiny twelve week old baby around the clock.

When Monday finally arrived, I called the pediatrician’s office first thing in the morning. After asking the front desk lady for a sick visit appointment she transferred me to one of the nurses in the back.

The nurse in the back denied me an office visit because she said he was presenting COVID-19 symptoms.

I explained to her no one else in our family was sick and we hadn’t left our home since bringing him home from the hospital because of the shut downs. But it’s like she didn’t hear a word I said. She said I first had to present a negative Covid-19 test, obtained from the drive thru pop up testing sites our state had in place.

It feels so upsetting and frustrating when your concerns aren’t being heard. God has given moms the gift of intuition and we just know sometimes. Our gut tells us certain things, you know what I mean? I knew it wasn’t Covid, but she had stopped listening to me a long time ago. I could tell I wasn’t going to get any help from her.

The next day I called another pediatricians office, and they were the complete opposite.

Yes I still had to answer what seemed like two pages of questions about every person in our family, but at least they would let me bring him.

Unhelpful Doctors Visits

From that first visit at twelve weeks old up until he was thirteen months old, I took him in every time he got sick. Without fail every four to six weeks like clockwork he would get sick with a fever. He wouldn’t eat, barely slept any time I wasn’t holding him, and no other symptoms that I could tell. With him being so little there was no way for me to know if his tummy, ears, or throat were hurting. I always knew when another episode was coming, even scheduling family events around those dates.

We ended up going to five different doctors and no one could ever tell us why he kept getting sick. They would test him for covid, strep throat, flu, ear infections, UTI’s, but everything always came back normal. There was just one exception one time the test for UTI came back positive.

After so many visits to one doctor and everything always coming back normal, I would begin to feel like they were dismissing my concerns and I would move on to another doctor.

I practically had to beg one of the doctors to order blood work done. I needed reassurance that it wasn’t cancer. She kindly humored me and ordered two blood tests done a month apart from each other. But again, results came back normal.

Living With PFAPA Syndrome ( not knowing what it was )

After so many visits, the Dr. told me to not bring him in to the office unless the fever lasted more than five days. Or if he started showing other symptoms or signs of illness like mouth ulcers.

For the next eight months or so, I managed his fevers at home. I researched and learned many things in that time.

One of the things I learned was that fevers themselves are not the bad guys. When we get a fever, it is our body’s way defending us against whatever bad guys are attacking our immune system. In most cases, I read it was better not to treat the fever with things like Ibuprofen or Tylenol.

I ended up learning a lot about the adverse effects on our health, those popular over the counter medications have on our body.

Learning how to manage fevers naturally became my focus. Mostly to keep him comfortable and able to sleep.

As he got older and we started introducing first foods, I was very diligent with the type of foods he ate.

No refined sugars. Only nourishing traditional foods like, chicken and beef liver. Probiotic rich foods, bone broths, and a wide variety of fruits and veggies. Once my breast milk supply diminished and he weaned when he was sixteen months old, I gave him only raw milk from a local farm.

Our family had already started the switch to eating whole foods and cooking with good healthy oils and fats but his sickness really pushed me to keep learning. The Weston A. Price Foundation was a wonderful resource for me. I purchased the Nourishing Traditions Cookbook by Sally Fallon and learned how to prepare traditional foods.

Finally Finding A Doctor Who Genuinely Cared

Just shy of his second birthday he got sick like normal, but for some reason I felt like I needed to take him in to be seen again.

I decided to call a different doctor whom I had heard great things about. When I made the appointment I told the front desk that I was seeking a second opinion for my almost two year old son.

When we went in, I explained to her his entire history from the time he was born.

I told her how we were quarantined for weeks after his birth. How he started getting sick at twelve weeks old and e v e r y four to six weeks after that. Told her about the blood work done and the fact that I hadn’t felt HEARD by any doctor up until now, not even his regular pediatrician.

And for the first time, I felt heard. I felt validated in feeling concern for my baby. She listened and asked questions. She gave him a full physical examination like no one else had ever really done before.

But she too was at a loss. She didn’t have any answers for me. She was concerned because she had never seen anything like this either. “Something is causing these fevers”, she said. So she referred us to a pediatric ENT specialist.

In the meantime we discussed inflammatory foods and the effect those have on the body. Dairy was a big one.

I immediately took him off all dairy products and gluten. And of course did MORE research.

Finally Getting The Diagnosis of PFAPA Syndrome

A few days before our appointment with the specialist, a friend of mine who is a registered nurse sent me some information she found while doing research on something else. It was a medical article she found where they discussed PFAPA Syndrome.

It sounded like they were describing everything I had lived through the last two years with my little boy. I couldn’t get enough information about it.

I think I probably read every article and blog on the internet that talked about PFAPA Syndrome.

By the time we met with the specialist I was convinced that’s what he had.

I didn’t say anything about what I thought it was to the ENT or the pediatrician that came in to examine him. I simply yet again gave them all the details of what we had been dealing with for the last two years.

Both doctors listened to me and then proceeded to examine him. They said it sounded like he had PFAPA Syndrome. Which stands for periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis. 

A recurring periodic fever in children that they have been seeing a lot in their office lately.

They explained to me there is no real way of testing to get a 100% accurate diagnosis because there is nothing TO test. The next best thing they could do for me was give him a shot of steroids at the beginning of the next fever episode. If the fever broke within just a couple of hours then it would most likely be PFAPA Syndrome for sure.

I chose to forgo the steroids shots. By this time in our journey I had become a “crunchy” mama if you know what I mean. The thought of putting steroids in my two year olds body didn’t sit well with me.

Treatment Of PFAPA Syndrome

There is no effective treatment for PFAPA Syndrome. Most doctors treat it with a single dose of steroids, but that doesn’t help heal PFAPA patients. It only makes it so if given when episodes of fever start, It will significantly shorten the duration of the episode. In my opinion, it’s like putting a bandaid on the problem.

This medical treatment also has a huge drawback. Instead of the recurring episodes of fever being every four to six weeks like they are for my little boy. The doctors said they would be recurring more often, like every two or three weeks.

So pretty much, they will only last a few hours but come around much more often. And besides that, there is always the risk of other unknown side effects.

Something else that has proven to be of help, sometimes (not always), is removing the tonsils. In many cases helping patients into complete remission.

Performing a tonsillectomy wasn’t an option for my little boy at this time because he is so young and small in size, but it may be an option we revisit in the future.

A recent study indicated, upping vitamin D supplementation has shown to help ease symptoms.

I was told there are clinical trials going on all the time to learn more about these recurrent episodes of fever. Not very much is known about PFAPA syndrome. They don’t know what causes it or why eventually most kids just outgrow it on their own. In rare cases it is known to last into adulthood. The only thing they know for sure, is that they are seeing it a lot more in recent years.

Something else I was told is that it may have a genetic cause. If other family members have this syndrome, it could be passed down through genetics to close family members.

If you want to read additional information, diagnostic criteria, and results from recent studies I recommend this medical article.

Common Symptoms Of PFAPA Syndrome

Since the disease onset of PFAPA happens in early childhood, sometimes too early for littles to tell us what hurts. It may be difficult to pin point some of these symptoms.

The main symptoms associated with this periodic syndrome are recurrent fever, sometimes even febrile episodes, and swollen lymph nodes in the neck area.

In some cases, sore throat, joint pain, and abdominal pain.

What Our Family Is Doing To Lessen Symptoms

I plan to eventually run other laboratory tests on my little guy. Even though I’m already so careful with his diet, I would like to run tests for food sensitivities.

The more I learn about this syndrome of periodic fever, the more convinced I am that it’s an inflammatory response to something.

In the meantime, I have seen a significant difference in his symptoms when flares occur.

For example, when I am diligent in only feeding him anti-inflammatory foods, the fever does’t get as high, his lymph nodes don’t swell up nearly as big and the episode doesn’t last as long.

I truly believe there is a significant correlation between food and this disease. At the very least, if food alone doesn’t heal it certainly helps.

Anti-Inflammatory Foods To Help Lessen PFAPA Syndrome Symptoms

At two years old this is what his diet consists of:

I limit (like he practically never has these) all refined sugar or processed food. Pretty much nothing that comes in a package.

• Sourdough baked goods prepared by me.
• Grass fed beef we buy from a local farm.
• Chicken and beef liver. This is where I buy the chicken liver from and the beef liver I get in our beef order.
• Fish.
• Variety of organic fresh fruits. Blueberries, strawberries, raspberries, blackberries, oranges, and golden kiwis.
• Avocados, mushrooms and sweet potatoes are his favorite.
• Other extras I like to sneak into his food are bone broth, probiotics, chia seeds, and flaxseeds.

The only oils used to prepare food or baked goods in our home are coconut oil (this is my most used oil), virgin olive oil, or avocado oil.

For sweets I make sure there is always an option for him to eat. Especially during the holidays or birthday parties.

I make him ice cream with coconut milk or something else sweet with sourdough. A lot of times just dark chocolate chip sourdough pancakes will do as dessert for him.

For convenience foods I can just quickly grab and throw in the diaper bag when I’m in a hurry, the only ones I buy are serenity kids pouches and puffs. They are made with great ingredients that I use in my own kitchen , and are nutritious.

And larabars are another great choice for on the go snacks. There are only a handful of ingredients in each bar and they are gluten free, dairy free, and don’t have any added sugars. The blueberry and lemon are my little guy’s favorite flavors.

Explaining to extended family he can’t eat all the treats they want to give him can be a little tricky. But for the most part, everyone tries to understand even if they think I’m a little nutty about a two year olds diet. 🤪

Here’s a blog post where I talk about where I source good wholesome ingredients from. But if you just want a one stop shop for pretty much anything I’m talking about here check out Azure Standard.

Other Supplements During PFAPA Episodes That help

The two things I give him as soon as I notice he’s starting another PFAPA episode, are Leefy Organics Prana drops, which are turmeric and ginger extract. And the Nidra drops, which is tart cherry drops. Both of those are so great for fighting inflammation.

I give him the turmeric and ginger drops (Prana) every morning during episodes, and the tart cherry (Nidra) drops at night before bed.

Besides making sure he gets a lot of outdoor time even when he’s sick, I give him Mary Ruth’s Vitamin D3+K2 drops once a day.

And liposomal Vitamin C.

I am just now learning about magnesium and how it may also help fight infflamation, so I may include that in the future as well.

Final Thoughts…

I have hope that one day he will be completely healed from this.

In the meantime, we are set to return to the Ear Nose and Throat specialist every six months for the foreseeable future.

A tonsillectomy is something we will consider when he gets older.

For now we continue to pray that the Lord will work all of this for His Glory.

One thing I can say for sure is that my faith has become stronger. Jesus has sustained me through so many sleepless nights. Through so much fear. He continues to give me patience and hope through every feverish episode and hard day that comes from taking care of a little one with PFAPA syndrome.

I want to make really clear that everything written here is simply our family story and experience. What I speak of here when it comes to treatment and foods and supplements we use, is purely for the sake of sharing what I feel has helped my son.

I am not an expert in PFAPA syndrome. As always I urge you to do your own research and seek out help from a medical professional that will really hear and validate your concerns.

If you’ve read this far, thank you! If you’re also dealing with PFAPA in your home don’t hesitate to reach out with any questions you may have about what you read here.