Her Story

The first fever episode I can remember was in the summer of 2011. We were at the lake house with our friends. Saturday night, my sweet little 18 month old vomited twice and started running a very high fever. We come home Sunday and took her to the doctor on Monday morning, and this is when it all began. Every month, it was a trip to the pediatrician, blood work, check the ears, check for a uti, check for strep throat, and the conclusion was "It is just a virus." After a few month, I started documenting each episode and realized she had the same symptoms every four to five weeks(vomited twice, extremely high fever (104-105) for three to five days, eye and leg pain, abdominal pain, and very fussy). These episodes are very hard on my little girl, but the episodes literally drain me both emotionally and physically. I am constantly worried about her having a febrial seizure because of her 105 fevers. Near Anna Claire's second birthday, I took her the the pediatrician with my documentation. He agreed that this fever cycle was not normal and he said this was out of his scope. We were referred to an infectious disease doctor at Texas Children's Hospital in Houston, TX. I spent many hours online researching fevers. All her symptoms pointed me to Periodic Fever Syndrome. As I read about the different varieties, I saw the PFAPA version. During the next episode, I notice Anna Claire's lymph nodes were swollen, her throat was red, and she had a large mouth ulcer. I now began to understand why my little two year old was in pain and so irritable. Dr. E, the infectious disease doctor, listened to our story and examined Anna Claire. She agreed that she thought Anna Claire had Periodic Fever Syndrome. Anna Claire had blood work to figure out which type of Periodic Fever Syndrome she would be diagnosed. Her c-reactive protein came back elevated, but everything else came back in normal range and without a conclusion. Some versions are diagnosed with a blood test or genetic tests, but a few varieties are a symptomatic diagnosis. We opted not to have the genetic test since it was going to cost us $5500. More than likely, it would rule out a few other varieties of Periodic Fever Syndrome and not change treatment. The Dr. E suggested using a steroid, 1/2 tsp. prednisone, at the beginning of an episode to cease the fever. I hated the thought of giving a two year old a steroid each month, but she said there were not any other alternatives. The steroid ceases the fever within a few hours, but the side effects of the steroid are BAD...."ROID RAGE" mean, fussy, emotional, grumpy, constant crying, etc. The ID Dr. referred us to a pediatric rheumalogist, Dr. G at Texas Children's Hospital. She agreed with Dr. E and also recommended putting AC on a daily anti-inflammtory called colchicine. She said this medication would prevent the episodes. I thought to myself "Lady, you are crazy....I am not putting a three year old on a daily medication." There is little information about the long term side effects of this medication. We also met with two ENTs about removing Anna Claire's tonsils. Both the ID Dr. and the Rheumalogist were against this procedure, but both ENTs were willing to perform the surgery. But neither ENT had good data or experience with PFAPA and tonsillectomies combined. In the research I have found, it looks like there is about an 80% cure rate. I am thankful we have a temporary solution, but in my mother's intuition and in my heart, I am not satisfied with this diagnosis, the treatment and feel that there is more to my daughter's episodes than Periodic Fever Syndrome. I believe the steroid is masking the symptoms and is a temporary fix to a real problem. After a lot of prayer and advice from others, I decided to try my last resort...functional medicine with a holistic approach. This week, we met with Dr. K and he had good insight to her fevers......stay tuned.