mystery diagnosis

her skin would get SO red from the fever

Cailey has been getting sick frequently since November. It all started in Disney when she was sick for two days with a fever (and headache/achy-ness/sore throat, etc)...but still managed to make it through going to parks (and just resting on benches or watching shows). The worst day was at Hollywood Studios so she was able to just relax and we went to every possible show. Then she was better.

In January it happened again. Random...she was normal, then down for 3 days, then completely back to her old self. I didn't take her to the doctor because I assumed it was some kind of virus that just had to run it's course. (And never connected the sicknesses until May.)

February she wasn't sick at all and did a TON of running to prep for her 10K.

March she got sick TWICE...within two weeks!! After getting sick the second time in March I was ready to take her to the doctor and HOPING they wouldn't tell me it was something random and send us home with no answers.

They did a strep test and it was negative. She had HORRIBLE headaches but they did tons of neurological tests that showed no signs of tumors. They sent me home and told me it was nothing....to let it run it's course. I am a BIG believer in doctors and assume they know what they are talking about. The time I took her in it wasn't to see her usual (and my favorite) doctor because she wasn't working that day. It was someone we had not seen...but still...I believed her.

April...sick again. Always started with a headache, then HIGH fever (103-106), canker sores, sore throat, no appetite, lethargic for 2-3 days, then COMPLETELY bounces back to normal. Laying on the couch ALL day long then one day got better in the evening and went out to play soccer!! I mean back to NORMAL!

It was craziness!

May...sick twice and Brian and I were D.O.N.E. with her suffering. She got sick on a Friday evening and was SO hot and wishing she would die because her head hurt so badly (saying terrible things while in pain). She wouldn't eat...she had been at the pool all day Friday and was fine then Friday night she said she didn't feel good...and I knew that look. We called the dr. but they were too booked. Brian insisted on getting her labs done immediately while she was STILL sick because we knew she'd be better by Monday. Dr. Walker called me from her cell and said she'd see us the next day...on a Sunday for labs. Brian and I both went because there were no nurses and we knew we'd have to help the dr. hold her down to get blood:). We brought the boys but Kinsey was with the Morgan's. The night before I went back and looked on my monthly diary to see how often Cailey had been sick (SO BEYOND thankful that I keep that diary!) and wrote down the dates to bring with us.

For some reason I told her to open her mouth and looked to see her tonsils...covered in canker sores. I figured out why her throat hurt so much! I was CONVINCED that she needed them out and would then stop getting sick. They aren't big...or swollen...completely normal...but I wanted them out.

I walked in the dr. on Sunday and told Dr. Walker I knew the answer to our problems and that I wanted her tonsils out.

My dad battled to get mine out for ear infections for YEARS and they wouldn't do in until finally they found someone who would. I never had another one after that...even though they said it wouldn't help.

She looked in Cailey's mouth and said they weren't big and didn't look like they needed to be removed. sigh. I was convinced it would help!

We talked about the symptoms, I gave her the dates of illnesses and she was stumped. She took the labs and said that if they came back normal then she would send the info on to infectious disease at Duke to see if they could figure it out.

I got a call the next Saturday (again...from her cell...on her way to vacation!!) We LOVE Dr. Walker!!

All the labs came back normal...but it did show Cailey had mono within the last three months. (My guess is March) Thankfully we had NO idea so we're guessing it didn't affect her much! I'm glad she got it out of the way young and basically unaffected! SO...she called Duke and described Cailey's case.

They said it sounded like PFAPA (Periodic fever, aphthous stomatitis, pharyngitis and adenitis).
When I googled it I could not BELIEVE what it said! It was her exactly! (Plus achy from the high fever and a severe headache which we're guessing is also from the fever..and lethargic b/c of the fever..and no appetite b/c of the sores.)

Here's the info:

The key symptoms of PFAPA are those in its name: periodic high (103-106) fever at intervals of about 3–5 weeks, as well as aphthous ulcers, pharyngitis and/or adenitis. In between episodes, the children appear healthy. At least 6 months of episodes. Diagnosis requires recurrent negative throat cultures.

Then she told me we could do three things.
1. wait it out...and deal with it for 2-3 years (um...no)
2. take a steroid on day one of the sickness and it will maybe shorten the cycle BUT it could also cause it to start happening once a week instead of every 3-5 weeks (umm...no)
3. Or number three....get her tonsils out. Umm...YES!!! I just knew it!! They have no idea why it helps but it does and will cut down on her episodes either completely OR she have a break in the cycle for a few months and then it comes back but the episodes are less intense.
So now we wait for an ENT appointment.

She's been sick once in June and we are praying that she doesn't get sick at her two July camps. Since the recovery is 14 days we're thinking she'll have to get them out in August. I'm just anxious to make the appointment and get her better. I'm also SO thankful they figured out what it was and we weren't sent home with NO answers. That is SO very frustrating!! It's also made me realize how very blessed we are to have healthy children. I can't imagine what others go through not knowing what's wrong then finding out much worse information.