Recurring Fever Syndrome “Flare Up”
We had a really tough week! The weekend after Thanksgiving my youngest was feeling ill. He was dealing with fever, joint pains, headaches, doctor visits and blood withdrawals. My youngest son has been dealing with some type of recurring fever syndrome for most of his life, and this Recurring Fever Syndrome flare up was a doozy. We have dealt with fever before and as usual I was hopeful that he would get some other symptoms to explain the fever (runny nose, cough, etc.) but nothing – just fever! I took to him to his doctor to get him checked out and the doctor ordered his blood levels to be checked. When the results came his doctor said that many of his results were elevated and he referred us to see a Pediatric Rheumatologist in Los Angeles.
Our morning started at about 430am so we could make the 85 mile commute to the Hollywood area. We were very happy and grateful to be have an appointment with Dr. Judith Garza. Our pediatrician said many good things about her. I had seen a different Rheumatologist before and let’s just say we did not agree. I was really eager to meet Dr. Garza and I was hoping for answers. She examined Dylan and said that his lab work was really elevated. What they look at in fever disorder kids is C-Reactive Protein, ESR, and White Blood Cell Count. These are all blood tests and in my son’s case have been elevated during fever episodes and continue to be elevated. The doctor confirmed that Dylan does have some type of fever disorder but she could not tell me specifically which one. She mentioned some fever disorders like TRAPS, HIDS, PFAFA and FMF. She explained that the only way to truly tell if he had one of these is to do a Genetic Blood Exam and they would be looking for a specific gene. So right now Dylan is getting blood tests 2 times per week for the next 2 months to monitor his levels – it’s going to be a long 2 months.
I have noticed that Dylan is really strong through all of this – I can only pretend to be! He has taught me to be positive and just take one day at a time. I think it was on our third visit to the doctor he had 103 fever and he was lying on the doctors table and he said, “Mama you are so pretty today.” I wanted to burst into tears. That made me realize that I needed to be positive for him and me. We have dealt with these fevers before and it pains me to see him go through the fevers and all the blood tests. I take solace in the fact that Dylan is a strong, healthy kid and that these fever episodes are not happening as often but this latest flare up hit him really hard and shook me up in the process. After all, he is still my baby boy even though he is 5ft tall and weighs 125lbs!