Fevers

Some of you may remember that Fevers use to be a regular thing for our family. I'll give you the background first - but feel free to skip to the end.

When Jackson was a young toddler (probably around 18 months old) he started to get sick a lot. Just a fever though, with no other problems - no ear infection, no strep throat - just a fever. After about a year we realized he was having them not only with more frequency, but with a strange cycle as well. When I started tracking them, they would come every 2 months. But as time went on, they became more frequent. When they got to be every 2 weeks (17-18 days to be exact), we got rather concerned. Up to this point, our Doctor would just say "it's not uncommon for kids his age to have a fever for some odd reason. He'll get over it." And he would get over it . . . only to have it come back again 14 days after the last one ended. The fevers would range anywhere from 101 to 106. They were not fun.

In the summer of 2002 (Jackson was 2.5) our family Doctor agreed that we needed to see a specialist. "I don't think it's Leukemia" he said, "but I don't know what is going on". AAAAAAK! Don't say LEUKEMIA to parents who are already worried! Anyways, he helped us set up an appointment with the Oncology Department of Primary Children's Medical Center in Salt Lake. It was a tearful weekend for me while we waited for that appointment. I was so fearful of loosing my little boy. In the meantime, Jackson had to have his blood drawn - something that ended up happening on a regular basis as well. He hated it and would cry and cry every time. He never got so upset we had to tie him down or anything - as long as I was holding him he would hold still.

At Primary's they ran their own battery of tests. When the Doctor came back he said "The good news is your boy does NOT have cancer. The bad news is we don't know what he has". Then he helped us make an appointment at the U of U Hospital Pediatric Infectious Diseases. It took us a few weeks to see the Specialist there and in the meantime continued to get regular blood draws (during fever times as well as non-fever times). We learned from those draws that when he was healthy, his white blood count was normal, but when the fever hit they white-blood cells would sky rocket. White-blood cells are suppose to increase when there is an infection. But for some reason, Jacksons body was telling his white-blood cells to increase on a regular basis, even though there was no infection.

We saw Dr. Bythington at the U of U Hospital in the Fall of 2002. Jackson was still having fevers every other week. By this time, Jackson was so freaked out by doctors and hospitals that we had a hard time even getting his weight and height. Dr. Bythington did her own assessments and blood tests and told us to meet with her the next week.

PFAPA is what she told us Jackson had. PFAPA is an acronym for Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis. PFAPA patients have fever episodes that last an average of 4.8 days and recur every 28 days on average. She put him on Cimedidine (a medication usually used for people who have serious heartburn - go figure). He had to take it twice a day - forever. Ugh! It seemed stressful at first - any parent whose kid has had to take penicillin for 10 days knows how hard it is to remember to dose properly for the entire treatment. How was I going to do this forever? Fortunately Jackson was a trooper! At first he had the liquid version - a horrible tasting medicine. Then he learned how to swallow the pill form - much easier for him AND I. This medicine isn't suppose to cure him - it's just suppose to push the fevers further apart. It immediately started to work. Instead of having fevers every 2 weeks, he went to 2 months apart. It was wonderful!

This continued to happen through the winter, but in the Spring/Summer of 2003 his frequency seemed to come back to every 2 weeks even though he was still taking his meds twice a day. When we met with Dr. Bythington she was concerned, but said we should continue our routine and see what happens. She told us that a tonsillectomy is a treatment that is effective for 80% of PFAPA patients, but she felt Jackson was too young to undergo that type of surgery (being 3.5 now) and wanted to wait and see how another year of the Cimedidine worked. When fall came around, the fevers returned to their 2 month cycle. But in the Spring of 2004 they came back to 2 weeks. For some strange reason, the medication would work in the fall and winter, but not in the spring and summer. Bizarre!

This story is longer than I meant it to be, I apologize for anyone who is still reading this. ANYWAYS - it was determined that Jackson would get his tonsils out in August of 2004. I still don't understand why a tonsillectomy is related to Jackson's periodic fevers - but thankfully other people did. Jackson took his medicine the night before his surgery and has never taken it again. The surgery was a success and he has been the most healthy of any of our kids ever since . . .

. . .Until this weekend. And hopefully we are just being paranoid parents - but Jackson has been having a fever for the past two days with no other symptoms. I decided to make this post this morning so that I could have documentation of when his fever came on. So if he has another fever in a few weeks we can see how far apart they are. We'll keep you all posted!