When Emily was about 15 months old (in July 2011) she started getting fevers. She would get a fever about once every four weeks. They would last about 3 or 4 days, usually the fever would stay right around 103.5 degrees. I would rotate Motrin and Tylenol to help with her temperature. The Motrin was supposed to last 8 hours and would usually last about 4 before her fever spiked back up again (which is why I used to have to rotate the medicines to keep her fever at a reasonable level).
Emily would literally have NO other symptoms besides a fever. She wouldn't have a runny nose or a cough or anything else. She always drank well during the fevers, but sometimes she didn't eat as well....the doctors always said that was probably just b/c her fever was so high.
The first couple times she got a fever I would take her in to the doctor
that day to get her checked out. They always said "her ears look great, throat looks great...it's just viral." I was always thankful that it wasn't more. After we had continued on this path for about 4 months of trips to the doctors office (and it always ended up being nothing), I would wait until the second or third day of running a high fever before taking her in. I didn't like it, but I knew what they would tell me. Still, by the second or third day I would start to doubt myself. I'd always take her in and they always told me it was viral.
Once I realized that these fevers were happening on a regular basis I thought back to the first time she had one, recorded the dates, and always took good notes from then on. After about the sixth month of this happening, every time I went to see the doctor for her latest fever, I would pull out her fever history and show it to the doctor I was seeing. They would take notes, but say it still wasn't a big concern to them. They would say it was normal to have these "unexplained fevers" (an unexplained fever is a fever with no other symptoms) from time to time.
I could usually tell she was about to get a fever about a day before she actually got one. When I would touch her palms they would be just the slightest bit warm. It was nothing anyone would notice except me....so slight. Once her palms started getting a little warm the fever would usually start within about 24 hours. Poor baby. She didn't feel great during the entire three/four days, but as long as I could keep her fever down she was okay.
She wasn't contagious with these fevers. Bert and I never caught anything from her after many, many months of these fevers coming and going. Emily had 3 different fevers in the 2 months after Hannah was born. I was so confident that she wasn't contagious that I didn't even worry about keeping Emily away from Hannah, when Hannah was just weeks old. I had enough to keep me busy with a 3 week old and a 2 year old. I didn't need to create more work for myself when I knew in my gut she wasn't contagious. I got to know her fevers very well over the course of a year and a half. I knew when it was "just one of Emily's fevers" or when it was something else. Still, we missed many church services and playdates b/c of her fevers. Even though she wasn't contagious, I couldn't bring her to church/MOPS/playdates running a fever.
During a fever in March, 2012 I took her to the doctor. They did blood work and everything came back normal for having some type of virus. They asked me to bring her back in 2 days if she still had the fever....so I did. This doctor felt like it was time to test for a UTI to make sure that wasn't the issue....it came back negative. Em's fever was gone the next day, but after reviewing her fever history this doctor felt like it was time to go see a specialist. She wasn't overly concerned, but thought it was time to try to figure out why she keeps having these unexplained fevers.
We took her to a Pediatric Immunologist in Raleigh who specializes in treating children with recurring fevers. He did lots of blood work and asked lots of questions. During her exam he looked at her tonsils. Several doctors had told us that she had big tonsils, but we didn't think too much about it. This specialist said that in all his years of looking at children's tonsils, Emily's were in the top 5 biggest (not top 5%...just top 5) he had ever seen. Yikes!! We had to go back a couple times b/c they needed specific blood work from her when she was well and blood work when she had a fever. After finally getting all the samples that they needed and waiting for those results to come back, they diagnosed her with PFAPA (Periodic Fever, Aphthous stomatitis, Pharygitis and Adeniti
s). He explained that her fevers are not contagious, they should go away all together by the time she is 10 (if not before), and if she had her tonsils taken out there is almost a 100% success rate of no more fevers (no more PFAPA). He explained that the fevers weren't hurting her in any way....just annoying. We couldn't take her tonsils out at two years old....they like to wait until they're a little older, so we decided to look at some other options. We ended up putting her on a drug called Tagament...it's a drug used to help with heartburn and reflux. Studies have shown in the last few years that it also is very helpful in patients with PFAPA...it made the fevers much milder, further apart and in some cases got rid of the fevers all together. We decided to give it a try b/c it was such a low risk drug. The doctor actually prescribed this drug for her before she was officially diagnosed b/c it was so mild. After the first month of her taking Tagament her fever was shorter and didn't get as high. Woohoo! After about four months of being on Tagament her fevers only lasted a day, rarely got over 101, and were coming less frequently (6 to 8 weeks vs. the usual 4). Huge praise!!! After five months of being on Tagament we stopped it (Oct. 2012) and prayed that her fevers would continue to get better. She hasn't had a fever in almost 3 months...PTL!
We are so thankful to the Lord for healing our girl of this PFAPA! She may have another PFAPA fever at some point in the future, but they're getting so spaced out now that we are soooo encouraged! She also may still have to get her tonsils out (especially since they're so big...they may give her trouble), but we're thankful that doesn't have to be done right now! We're so proud of our tough little girl. She was such a trooper through it all! We love you, Emmy!:)
.JPG)
