Hello, thank you for the add! I m just learning about PFAPA, my son, Xander has not yet been diagnosed, but since he was around 6 months old he has been getting a fever once a month for 5 days, like clockwork! I can predict down to the day when he is going to get sick. He rarely has other symptoms except, fever, loss of appetite and very very swollen glands... These recurring fevers have caused him to have 3 febrile seizures in 2013! Every time I talk to a doctor about it they say that it is simply a virus... Because of the seizures hes had, every time he has a fever we have to check his temperature every 30-60 minutes 24 hours a day around the clock until the illness is gone. We alternate Tylenol, and ibuprofen and keep the house set to 69-70, push fluids and keep him in shorts and a t-shirt. I record every temperature and have notebooks full! Throughout the course of each fever, the Tylenol and ibuprofen will subside it for a couple of hours, and then come back....or sometimes not even work at all! Well today is day five of Xanders fever, he had just gone over 24 hours without a fever so we thought he was in the clear, only for him to spike a fever again last night! Every time I do research on why he gets feverish so often without other sickness symptoms or why itll come and go, it always brings me to PFAPA. Any advice mommas? I have read that a tonsillectomy and an Adenoidectomy can cure this issue! Every fever is heart wrenching because we dont know if he will have another seizure! I am still doing research and will be getting in touch with a pediatric rheumatologist hopefully this week. Any advice would help, thank you for reading!!
Posted on: Thu, 11 Dec 2014 13:21:26 +0000
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