Monday, February 8, 2010

PFAPA Syndrome????

Monday was a big day for us! A mystery has been somewhat solved! Here's the story...

Ever since Patrick was a baby, he would run a really high fever, sometimes up to 105. His fever would last for 5-6 days, and our life came to a sudden halt as we administered Motrin around the clock. Our pediatrician was never really worried. After mouth swabs and urine samples, she always just claimed it was a "fever virus,"--in her Indian accent. I love Dr. Achala Ellepola!

Well after the first year, we began to really see a pattern, just about every 4 weeks. I began to wait for these episodes to occur. And just one look at Patrick, and I knew the fever was back. His eyes were always red and glassy, and as he grew older he would start to come to me and say, "Mom, I am not sick today." Well, that was a dead give away. Patrick was terrified to go to the doctor to get his mouth swabbed.

Dr. Ellepola has always assured me that this would be something he would out grow. And the time between episodes has increased, so things seemed to be improving. I know other people would have gone for a second opinion, but I have always trusted Dr. Ellepola. Especially after she diagnosed his urinary reflux when he was just 2 months old. She has always been so calm and right on the money. I really felt comfortable with her advice, and just began documenting his fevers and not bringing him to the doctor. We have spent a small fortune in copays and probably a larger fortune in Motrin!

Patrick is now 5, and he'll be starting kindergarten in the fall. When his last episode occurred in January, I was convinced he had strep throat. His throat looked horrible, so I brought him in. Again and as always..."Just a Patrick Fever Virus." Since Patrick will be in school soon, Dr. Ellepola suggested we go and see the top pediatric immunologist in DFW--Dr. Wasserman.

After looking at his records of reoccurring fevers, Dr. Wasserman diagnosed him with PFAPA Syndrome. It is a rare disorder where a patient experiences periodic high fevers, swollen glands, oral ulcers, joint pain, and stomach pain. Patrick's glands always swell, and during one of the last episodes he did have an oral ulcer! There is a name for this! It is not just a "fever virus."

But I still love Dr. Ellepola. She was really right all along. Dr. Wasserman, really thinks that one day Patrick will outgrow this. Each year, he sees 4-6 cases in his clinic. And most of his patients have outgrown the syndrome. But here's the really really weird part...there is really no known cause for these fevers. And it is more commonly seem among Mediterranean races. Chris' grandfather was from Sicily???

So weird, but glad to now have a name for Patrick's fever episodes--PFAPA Syndrome

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