PFAPA & Chronic Tonsillitis

That was Nolan’s diagnosis after being in and out of the pediatricians office, ER (abscess on tonsil) and several weekend trips to the local Kindermender. After fever number  8 this past year alone we spoke to our pediatrician about having his tonsils removed. Nolan was averaging a fever monthly that would linger for 3-5 days, caused him to miss several school days, birthday parties and sporting events. He would have fevers spike super high and be associated with a sore throat. You would look in his throat and swear he had strep, but the tests always came back negative. He wasn’t contagious, but it was still a fever that would have to run his course. 

His pediatrician never actually diagnosed him with PFAPA, but after researching I was convinced Nolan fit the description. 

What is Pfapa syndrome symptoms?

Periodic Fever, Aphthous Stomatitis, Pharyngitis, Cervical Adenitis (PFAPA) is a syndrome that consists of recurrent episodes of fever, sore throat, mouth sores and swelling of the glands in the neck. ... No infection has been found in PFAPA, and it is not a contagious disease.

He did however have chronic tonsillitis. They would treat him with an antibiotic every time and then he would be good to go. This was happening way too frequently though. We had a prescription on hand before we went to the beach this summer just incase because we knew they could pop up anytime. Thankfully, it didn’t. We scheduled an appointment with the ENT back in July and his diagnosis was PFAPA {my mom gut felt good about this ENT then!} and chronic tonsillitis. 

He was scheduled for a tonsillectomy, but we would have to wait until today ~the end of September. Sure enough, Nolan had another fever spike the Thursday before Labor Day weekend, in other words the Thursday before a holiday weekend and before his first day of school...at a new school. We powered through the meet your teacher/see your classroom day thanks to a dose of Tylenol and then we scheduled an appointment at the pediatrician and he had yet another round of antibiotics. We spent the first few weekends in September cramming in Fall fun with trips to two different farms (post to come later) knowing he would have surgery to recover for at the end of the month into early October. 

As much as we anticipated today, we dreaded it. My baby boy had to have surgery and I wasn’t allowed to show any signs of nervousness because I had to be strong for him. We arrived at 6:45am, Nolan snuggled us as we went through the steps to check in and by 8:25am we were walking into the OR. Nolan did great up until we walked into that room. At that moment he tugged on my arm and screamed no that he didn’t want to. I had to pick him up and lay him on the table and watch him cry as they put the mask on him for his anesthesia. Telling myself to be strong, but I wasn’t. I cried and watched as he fell asleep within only a few seconds {that seemed like an eternity}. The sweetest nurse escorted us back to the waiting room and assured us he was in good hands. 

Snuggled in my husbands arms, tapping my foot nervously for the next 45 minutes or so {again, felt like an eternity}, we waited. His doctor came out and told us he did great, his tonsils were large and he had some tonsil stones {we had to google that one}. 

We rushed back to our baby boy as soon as we were allowed and he actually came out of the anesthesia rather well. A little bit of whining, wanting to chug ice water, refusing to drink the cherry flavored Tylenol {opted to wait until we got home because he wanted the grape flavor, I guess we should have asked if they had grape...}, 2 freeze pops that melted because he had about a 1/4 of each and snuggled up on my lap he fell into a deep sleep. We had to wake him and ask if he was ready to go home. He didn’t hesitate after we said go home. 

Today, we were preparing for a lot of crying, fussing and sleep. I did take about a 2.5 hour nap snuggled with my boy, but otherwise he has been asking to play a lot of games, watching a lot of tv, eating a lot of ice cream and popsicles and having to be told not to run around. I hope the remainder of the recovery goes in this direction, but of course we will take it one day at a time. 

Thank you Aunt Lainy for the visit and extra spoiling during her break today, to Grandma and Grandpa for coming over at 6am to sit and wait for Madelyn to wake up, watch her and spoiling Nols AND thank you everyone for all of your phone calls, texts and messages wishing him good luck and checking in on our sweet boy throughout the day. ❤️ 

Now, we wait and pray that the tonsillectomy is what we needed to put an end to his PFAPA and chronic tonsillitis.