Our New Normal

We are your typical family of four: Mom, Dad, daughter, son, and a yellow lab and house in a small subdivision in a small town. Really can't get more american than that.  We thought we had experienced true stress, pain, worry, fear; but really we had no idea what was ahead for us.

Recently, our 4 year old daughter Ella, has been diagnosed with a fever syndrome called PFAPA (Periodic Fever Aphthous Stomatitis Pharyngitis and Adenitis).  This is our story in discovering such a rare disorder and how we are dealing with this "New Normal".

In October of 2012, many plans were being made for our son's first birthday!  Red Wagon themed and an outdoor barbeque for our family and friends. I thought that was my 'stress' of the month but really my 'stress' was just beginning.  A few days before Hayes' birthday, Ella came down with a horrible fever.  I figured, as well as her doctor, a fever virus just let it run its course.  It did and she was better by the end of the week but unfortunately we had to cancel the birthday party.  And thank goodness our son stayed well!

In November (3 weeks later), Ella was sick again. A fever but also had a nasty cold along with it. No trip to the doctor because we knew just another cold and let it run its course. It did and she was better in a few days. And again thank goodness Hayes stayed well.

In December (3 weeks later), Ella was again sick.  This time high fevers lasting quite a long time with joint pain, bad cough, and another nasty cold that resulted in an ear infection. We were all sick this month and just chalked it up to its just our year for everything! But blood work was drawn for the first time this month to rule out any serious infections and thank goodness all was normal.

In January (2.5 weeks later), yep you guessed it - Ella is sick again. This time horrible joint pain, headache, high fevers (104!!!) and a red throat.  A panicked trip to the doctor, another terrible virus let it run its course.  I knew then (but I kept it to myself), that something wasn't adding up.  I continued to pray my heart out for guidance, strength, and health for my sweet four year old. And prayers answered that our son stayed well.

Still January (2 weeks later), Ella is sick again. This time it is mild - low grade fever, sores in her mouth, some joint pain.  Another trip to the doctor, because I just knew (and hoped) it would be strep. Strep test was negative and the tears began to flow. Now Ella and Hayes have a wonderful and experienced pediatrician. However, he is not the type of person that you cry to.  There was no controlling it.  And he listened to my concerns and really understood that things aren't adding up. I explained to him that I had been researching and reading about Ella's frequent illnesses and symptoms and see that there is a pattern to it. I told him I think she may have a periodic fever syndrome. Her symptoms are spot on!  I said if I am correct that we would see him in a few weeks.  He listened but I honestly didn't think he believed me. Well the part that I said he is a wonderful doctor comes into play - I received a phone call from him that evening saying "I think you maybe on to something here..."

February (11 days later) Ella is sick again.  The worse week by far. Fevers close to 105 and joint pain that is just pitiful. Awful, gut wrenching, heart breaking best describes it. This episode lasted 6 long days. Blood work was drawn and her crp level was the only thing that was raised which is another characteristic of pfapa. We are confident that this is a part of Ella now and therefore our "New Normal" way of life.

This blog is to help me find comfort in sharing our journey with Ella and this awful syndrome. It is also to help, and I pray it does, to bring comfort to someone else who might be going through this as well. Pfapa is a very rare disorder, one in which you feel very isolated and alone. It's hard to find someone to understand what you are going through. We also hope this blog will update those who would like to keep up with Ella's progress and most importantly to pray for her.  I have never felt more in need of my sweet Lord than I do now. May this journey bring us all closer to HIM!