Frequent fevers and PFAPA / FMF

I have been meaning to post this for a while for any other parents out there who end up in my situation and are questioning if their child might have PFAPA/FMF and how to proceed.When my daughter was about 7 months old she got her first fever, it was about 102-103F for 4 days. She then continued to have a fever every 4-6 weeks for the next 2.5 years of her life. At first we thought, she's a baby in full time daycare, its just common viruses. The first couple times we would take her to the doctor when the fever would last 4-5 days, but they never once found a ear infection, UTI, etc. She also almost never experienced common cold symptoms like a runny nose, etc. When she had a fever she would be lethargic and have very little appetite, as she got older she would also complain her knees hurt sometimes. It was an extremely exhausting 2.5 years of my husband and I taking off way too many sick days caring for her, and watching her in pain so often. Eventually after talking to enough parents and teachers at daycare we realized that other kids weren't getting fevers as often.At this point I decided to make a spreadsheet of every fever she had ever had, I make a graph, and I brought it to her pediatrician and told him something is wrong with my kid and we need to figure it out. He is an amazing doctor and took us seriously. After running a few tests, nothing was conclusive, so we were referred to a pediatric rheumatologist. She ran more tests, one of which included a genetic test. The results of that test came back with a mutation in a gene related to Familial Mediterranean Fever (FMF), but her specific mutation is not know to cause the condition (a mutation of unknown significance). However my daughters symptoms were more aligned with PFAPA (periodic fevers with aphthous stomatitis, pharyngitis, and adenitis), though the start of her symptoms were younger than average. Regardless, we decided to start treating her as if she had PFAPA.We first tried giving her prednisone to stop the fevers right when they started, but that was hard as prednisone tastes horrible, and it made the frequency of the fevers shorter (every 2-3 weeks). By that time she had turned 3 years old, when the risk of general surgery is much lower, and we decided to have her tonsils taken out. It was a tough decision, because there was no assurance that it would help her.The surgeon who took her tonsils out has done this for hundreds/thousands of children, and our daughter was the first time she had removed them this reason. When the surgeon came out of the OR she said, "I have never seen tonsils like that on a 3yr old before, they were extremely damaged from inflammation". In that moment I knew we had made the right decision. It has been a year and a half from the surgery, and she has not had a fever since. Hopefully this will be a long term cure for her. via /r/Parenting http://ift.tt/2Btf2WA