Well it has been a long road, but we are hopefully near a conclusion with Nate's sickness episodes. After 6 rounds of blood work (8 if you count the re-pricks needed), a cat scan, urine tests, chest x-rays, an infectious disease appointment, a rheumatologist appointment, an ENT appointment, multiple doctor appointments, and many many high fevers, Nate has officially been diagnosed with PFAPA. This is a periodic fever syndrome where a child gets predictable fevers every four weeks with tonsillitis. Because his fevers have been so cyclical and his blood work came back abnormal (high CRP and Sed Rate) the doctors felt it necessary to take many precautionary steps before officially diagnosing him.
On August 12th Nate will have his tonsils and adenoids removed in hopes of curing this syndrome. We were given two choices: one was a treatment plan of putting him on prednisone (a steroid) every time he has a fever until he were to grow out of the syndrome, which could be anytime between the ages of 8 and 12. The prednisone would shorten the duration of each fever, but not completely rid the symptoms or amount of times he would fall ill. The other choice was for Nate to get a tonsillectomy and adenoidectomy. The success rate is only about 80%, but we are hopeful and willing to take the risk. I don't want Nate to miss out on life's activities and upcoming school because of reoccurring fevers, and it is just so sad and maddening to watch him go through these episodes. The rheumatologist did state that she has seen children diagnosed with PFAPA in the past, but then later discovered it was a genetic disorder that needed more attention. Both the infectious disease specialist and the rheumatologist also stated that they would like Paul and I to highly consider the prednisone route because it is "more conventional and less invasive." Although I respect their opinions, being sick every four weeks doesn't sound like an enjoyable life for Nate and does not meet my expectations when "looking out for the best interests of the child." Although their is a "chance" that Nate could have other underlying issues, we are not going to live in fear of the possibilities. We are also very hopeful that the surgery will work for him because I had the same reoccurring sicknesses as a child and had my tonsils removed. I never got strep or tonsillitis again!
Please say a prayer for Nate that he has a successful surgery and a quick recovery! Also, please pray for this surgery to cure Nate's diagnosis of PFAPA!
Here is a picture Paul took of him and Nate going out for ice cream after another course of blood work was needed. I think Nate might actually become a human sprinkler with all the pokes this poor guy has had!
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