Shop the fall collection ➔

Did your mind spit out a question mark when you read the words ‘Periodic Fever Syndrome?’ You are far from being alone. Most doctors haven’t even heard of it. Can you imagine your child having a disease that no doctor in your state knows about? How about even in your country? My son has Periodic Fever Syndrome (PFS) and was lucky enough to get both a diagnosis and treatment. Many more children and adults aren’t so lucky.

My son was around 18 months old when he started getting mysterious fevers. Crazy, emergency-room-worthy, up-all-night-pacing, high fevers. His pediatrician insisted they were just viruses. Kids get sick all the time, right? But my son wasn’t in daycare, where all of the germs are born via magical snot fairies. He also had no other symptoms. It didn’t add up. So I started keeping track of everything and taking copious notes. When the fevers started, how long they lasted, any and all observations. It turned out that they came every three and a half weeks, almost exactly, and they lasted almost always five days, peaking as high as 106 degrees. He also had stomachaches and vomiting. As time went on, he started having mouth ulcers and leg pain as well. The pediatrician still had no ideas, so I turned to the internet. Not to pat myself on the back, but I’m a pretty prolific Googler (ask my husband), and almost immediately discovered Periodic Fever Syndrome.

The NIH defines PFS as “a wide group of diseases characterized by recurrent attacks of apparently unprovoked inflammation and are thus considered among the so-called autoinflammatory diseases.” What this means is that a part or several parts of the body become inflamed for no apparent reason on a cycle. The inflammation causes the body to fever, which is the bodys way of fighting infection. But in this case, there is no infection. There are several categories of PFS, depending on which organs become inflamed, symptoms, and gene mutation: Familial Mediterranean Fever (FMF), Mevalonate Kinase Deficiency (MKD), Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS), Familial Cold Auto-inflammatory Syndromes (FCAS), and Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA), which is the most common Periodic Fever Syndrome, and also what my son has. Currently, a genetic test has been created to narrow down the genetic mutation associated with each PFS, but due to some clinical overlap, it can be tough to diagnose. PFS can come on at any age and can also dissipate on it’s own at any point. Many patients with PFS choose to treat their illness with steroids, most notably Prednisone, and Colchicine, a gout medication, administered at the start of each fever, ending it immediately. This treatment is also known to bring on fevers, or ‘flares,’ more often, while others experience no changes to their illness.

We immediately made an appointment with a rheumatologist, who was aware of PFS, but had never seen or treated a patient with it. We soon found our way to Rady Children’s Hospital in San Diego, who’s Fever Clinic has seen hundreds of children with PFS. PFAPA is characterized by inflammation of the tonsils and/or adenoids. My son, just shy of his fourth birthday, having spent the majority of his young life sick in bed, had his tonsils removed. He hasn’t had even one fever since. That said, he isn’t cured. This disease may follow him the rest of him life. He sometimes has what we on the PFAPA Facebook groups call a ‘feverless flare.’ Mood swings, high emotions, neediness, leg pains, and mouth ulcers are just some the many issues we deal with, on top of the already tumultuous Toddler issues. We still treat him with vitamin D3 and tart cherry juice, two supplements well known to fight inflammation. I’m still active on PFAPA support groups online, helping those who have only just heard of PFS, and gleaning all I can from others dealing with surgery aftermath. No one has ever and will ever ask for a sick child, and for those like my son who were lucky enough to end the fevers, and those whose with illnesses that aren’t so easily cured, the sense of relief that comes with finally, FINALLY getting an accurate diagnosis is immeasurable.

Watching your child suffer is awful, any parent can tell you that. But not knowing why or what to do about it is torture. Years of doctors’ appointments, emergency room visits, and hospital stays can break you down. But having a community of patients and families sharing their experiences and supporting each other can save you. I know this from experience.

Nicole Steadman

Nicole Steadman is a work at home mother living in San Diego with her husband and 4-year-old ninja. She is a freelance writer and aspiring children's book author. In her spare time, she is training to be a helicopter pilot and discovering the life-changing magic of tidying up.

It’s Okay to Say No to the Promposal

In: Kids, Teen
Boy holding pink sign saying "Prom with me?"

Promposals are cute.  But, even for the sweetest questions, it’s okay if the answer is not yes. I have more boys than girls at my house so the whole meet the boy asking your girl out with a gun posts don’t sit well with me. Boys and girls have an equally hard time negotiating friendships and relationships in high school, and I care equally for both. A young man spent some time, told his friends, made a cute sign, and planned to ask my daughter to a dance. A friend of my daughters mentioned he might ask (and even made...

Keep Reading

I Wipe the Slides

In: Kids, Motherhood
boy on slide

I want you to have the most fun possible at your tiny playground stars program, so I wipe the slides. I don’t want you to have a meltdown if your clothes get wet while I’m gone, so I wipe the slides. I want to have three precious hours of only managing your little sister, so I wipe the slides. RELATED: I’d Rather Serve My Kids Than Have Them be “Self-Sufficient” I don’t want you to feel embarrassed by a big reaction to wet clothes when I’m not there to help you, so I wipe the slides. I want you to...

Keep Reading

One Day You’ll Outgrow Being My Little Boy—But Not Today

In: Kids, Motherhood, Tween
Mother and two sons back-to-school picture, color photo

One day you will come home after your first day of a new school year and not wish to share a single thing. Not today. Today, you got into the car and talked non-stop about every second of your day. I was delighted!  One day you will not have countless first-day forms for me to sign and return the next day. Not today. I signed my name at least four times. I was happy to grant permission for you to play sports, learn algebra, and do whatever else I gave my permission for.  One day you will not allow me...

Keep Reading

The Sports Mom Shows Up For Her Kids, No Matter What

In: Kids, Motherhood
Youth baseball game

We’re nearing the end of club baseball/softball season, and the burnout is real. The time away from home, burning through gas to get somewhere for two hours with half your house packed only to pack back up and turn around and drive to the next two-hour destination is insane. I don’t even like the sport right now. There . . . I said it. I’m so sick of softball fields and wind-blown dirt in my face. I’ve seen so many balls thrown in the last two months that my eyes hurt. But I still show up. I love to see...

Keep Reading

Having Babies and Toddlers Is Exhausting—but So, So Sweet

In: Baby, Kids, Motherhood, Toddler
Family of four with baby and toddler on bed

I took the girls to one of our favorite coffee shops last week and all around me were parents of babies and toddlers. Their little ones ran about in the grassy area out back, toddling up and down the lawn, when it suddenly hit me with perfect clarity—the sun has nearly set on this season for me. It was a realization marked by internal tension, a mourning of the loss of one season contrasted by the joyful anticipation at the arrival of the next. It came out of nowhere and hit me like a tidal wave. Having five kids in...

Keep Reading

3 Common Phrases to Avoid Saying to Your Kids (and What To Say Instead)

In: Kids, Motherhood
Mother sitting with young boy on couch

Learning to love yourself is hard work. I did not grow up loving myself. Instead, I always felt inadequate, and I felt the need to change myself to prove my worth.  I want more for my kids. I want my kids to know their inherent value and worth. I want to empower my kids to love and accept themselves.  My self-love journey, aided by the expertise of a counselor, has helped me realize there are some narratives from my childhood I needed to unlearn. I had to accept my emotions as helpful and not something to be pushed down. I...

Keep Reading

They Love Each Other (and Sometimes They Don’t)

In: Kids, Motherhood
Toddler girl lying with big brother, color photo

When I was pregnant with his baby sister, Forest kissed my belly and talked about all the wonderful things he would do with this little girl he already loved so much. His plans changed, however, after she was born, and the thing he wanted to do the most with her was place her gently in the trash can. Some mornings he would kiss her softly, other mornings he would walk into the room where I’d be nursing her and say, “Her doesn’t look precious to ME.” Two and a half years later, Forest’s feelings toward Grace remain about the same....

Keep Reading

As a Mother, I Matter Too

In: Kids, Motherhood
Mother and daughter in living room

“What’s more important than me, Mammy?” my daughter asked. I looked at her, and she was looking at me. Her question wasn’t harsh or accusatory, it was curious. She was curious. We were in the kitchen, I was at the table working, and she asked me to help her find something. I told her I was finishing up some important work and then I would play with her. This is when she asked me what was more important than her. I bit my tongue to stop the words that wanted to rush out of my mouth. I wanted to proclaim...

Keep Reading

Dear Daughter, Follow Your Beautiful Heart

In: Faith, Kids
Mother and daughter smiling

When I held you in my arms for the first time, it was like time stopped. As you looked up at me with innocence and new life, I was struck by the reality that my main role in your life would be to guide and direct you on the right path. I hoped I would do the best job possible. As I watched you grow, I basked in your joy of putting on your pretty dresses, adorned with layers of costume jewelry, parading around the house for your father and me to see. I dreamed often of what path you...

Keep Reading

My Daughter is “Extra” and the World Needs More People Like Her

In: Kids, Motherhood
girl jumping

She is . . . extra. She just is. All the time she is extra sad, and then extra “OMG, Mom-that-was-so-epic-let-me-tell-you-everything.” Extra energetic, then extra I’m too tired to help with any family chores. Extra hungry, then extra refuses to eat the food she just asked for because she’s full. RELATED: In Defense of the Wild Child Extra loves to show how much knowledge she has, then extra doesn’t want to do her homework because she’s too busy “being.” Extra defiant, then extra brings home adorable “I love you, Mom” art from school. There is no middle ground with this...

Keep Reading