PFAPA in 6 year old
Hello, We have been fighting my daughters fevers since she was merely months old, she is now almost 7. About every 2 months give or take, she will get a fever that runs about 105 and last for about a week at a time. SHe does have swollen lymphnodes, no sores in her mouth, complains of headaches, and aches all over. I have been BEGGING her Dr's to run blood work ANYTHING to figure out what is going on with her. Most of the time she is extremely pail, and has dark circles under her eyes. We were blessed enough while finally being able to be seen by a urlogist, thinking it was her kidneys, due to wetting issues, that they made us an appointment with an Infectious Disease Specialist. The Dr told us that she has Periodic Fever Syndrome and explained the most common 3 types.
1) Removal of the tonsils, and adnoids along with taking Prednisone
2) It could be an issue in her bone marrow not producing enough white blood cells almost like a timer, and when the count is low that is when her fever spikes( hence her color)
We have to go to the hospital twice a week for the next 6 weeks so they can get a read on the elevation in her blood cells. In 8 weeks we go back to find out which route we will be taking to stop the fevers. I am EXTREMELY concerned about the bone marrow part of it, and wasn't sure if anyone else has been given this list of "could be's" ? Any information will be GREATLY appreciated!
Very worried, mommy