The acronym, PFAPA sprang into lives at the end of June. It has been effecting us since May.
May 14th Oliver was sick just like the majority of kids in his school. A fever for two days, some stomachaches and vomiting and he was better. It was a pain when he was sick again on May 29th, the day before we were to set out on our first summer vacation. Again, stomachaches, headaches, a loss of appetite and he bounced back two days later. It was slightly worrying when again, on June 13th his next fever came. This one higher than the previous two. More stomachaches, vomiting, swollen tonsils. We took a visit to the doctor to rule out Malaria due to our trip in March to the Dominican Republic as well as Strep. These tests were hard with a kid who hates being poked and prodded. They were full of vomiting, screaming, crying and were all negative. It was a little expected, and yet, alarming when the fevers, now high and lasting 3-4 days came back on June 29th. The pain was so great it was waking him at night and resulted in an ER visit at 12am to rule out appendicitis. "Do you think it could be PFAPA?" I asked. The doctor thought it was a possibility, but typically 6 months of data plus blood tests and a steroid test is needed to to make the diagnosis. I decided to make an appointment with a pediatric rheumatologist just in case these fevers kept coming back. The appt. wasn't until Sept., so by then we would have 4 months of data to go in with. I sat down and charted the fevers and wrote down on the calendar that if this was PFAPA, he would be fevering again on July 14th, the day after he turned 5. He was.
It is one thing to say, let's wait and gather information until our appt. in Sept. It looks good, and logical on paper. In reality, when your five year old is fevering and in complete pain for 5 days it seems completely illogical. I called our family practitioner and told her I believe Oliver has PFAPA. She had never heard of it. I told her one of the main test is to prescribe Prednisone to see if it gets rid of the fevers and other symptoms. She understandably did not feel comfortable prescribing steroids for a disease she had never heard of and asked me to make an appointment with an infectious disease doctor. I did, we wouldn't be seen until August 5th, two episodes away.
Those two episodes seemed unbearable. To watch Oliver waste away for those days being in such extreme discomfort was a bit maddening. I am not one to over dramatize things, but this thing that was happening to Ollie was a bit unacceptable, especially when I felt like we already knew what was happening yet couldn't do anything about it because we could not get into a doctor. My dad was on the hunt to help Oliver just as much as I was and between the two of us we were watching webinars by top rheumatologists, emailing with doctors across the country, talking to local doctors that were friends or friends of friends, joining support groups and talking non stop about choices. Basically, it came down to the fact that we wanted to have a tonsillectomy, not treat the symptoms with drugs. The problem was that Oliver had not been diagnosed yet.
I made an appt. with an ENT for two days later. Oliver and I went to the meeting armed with Chris, my dad, and a detailed history of what had been happening. She listened, and then she agreed. It was the first time my chest loosened. My brain slowed down. The world stopped spinning. She agreed that moving forward with a tonsillectomy and adenoidectomy had a good chance of "curing" his PFAPA (nobody knows if this is an actual cure or if it just treats the underlying symptoms so kids are asymptomatic). To highlight how rare this is, she is one of 9 ENT surgeons at Children's Hospital that services Denver, Broomfield and Colorado Springs. She sees 3 cases of PFAPA per year.
Oliver had his surgery on July 28th. After a pretty uncomfortable recovery, Oliver is back. He was supposed to have had two more episodes by this point in time and they never came. He has gained 2 pounds of the 4 that he lost during the PFAPA episodes and surgery. He has been full of energy, participated in his first kids triathlon and is back to being his funny little self that we all missed for those weeks. It is true that he was bouncing back between episodes, however with the anticipation of another episode always less two weeks away our lives started to revolve around this syndrome/disorder.
Our summer is slowing down, we are going to start school. We can do this all with a sigh of relief that school will not stop every other week and that we can plan to continue on with our road trip as we had. PFAPA is still a part of our lives, but no longer a visible one.
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