I have a 10-year old son who has been dealing with some type of fever disorder since he was 5-years old (we suspect he had this as an infant as well). His fevers do not follow a specific pattern, although his fever cycles tend to begin around October and will last through spring (Feb/March). Typically, he will have a low grade fever - between 100 and 101 - during episodes. These episodes can last from 5-7 days, and on some occasions, even longer. No other symptoms other than occasional headaches during episodes.
For years, my son went through blood test after blood test - with everything being normal with exception of elevated SED rate and C Reactive protein: both of these are typical of certain fever disorders. We even saw a gene dr. to test for Familial Mediterranean Fever but no gene link was found.
A fever disorder specialist at San Diego Children's Hospital was inclined to diagnose him with PFAPA when he was 7 (3 years ago). We were also told that he would likely grow out of it. Last year, his fevers went away and we thought that he "grew out" of it. Unfortunately, his fevers have returned over the past 30 days, following the same pattern.
Looking for families dealing with children long term fever issues, PFAPA, TRAPS, etc. I'm hopeful that he will grow out of this but this latest "relapse" has really taken the winds out of our sails. Has anyone had a child eventually try meds? Does your child have recurring fevers? Any help, feedback, advise would be appreciated.
Sorry to hear about your son with fever! I do not have any children, but I am 51 and have reoccurring fever. Right now for the next several weeks I'm supposed to keep track of my temperature daily,for my Dr. Taking it several times day, I wish you and your son the best and hope you can find help for him and he gets better soon!
We haven't been dealing with Periodic Fevers Syndrome for that long but last March my daughter started fevering about every 6 weeks with fevers going up to 105 with pain in her joints, stomach also throwing up. We have been seeing a Rheumatologist at Children's Hospital Boston who is at this time trying to diagnose her. She had the full "Periodic Fever Panel" genetic testing done through GeneDx. A lot of these periodic fever syndromes are very similar. Was there a reason why they did not do the full Periodic Fever Panel? That includes a bunch of the different fever syndromes. In August, my daughter got put on Colchicine and it seems to have pulled her fever further apart and her symptoms were not as severe. I know it works for some kids but not others. I wanted to try that first before using Prednisone. We are still awaiting the genetic testing but should hear back soon. Good luck with everything, it is so hard to see your kid not feeling well. Have you seen a rheumatologist?
my son has a fever issue and they are trying to diagnosis him with a rare blood disorder since they have discovered that is red blood cells are enlarged and have been since he was 9months and he is now 2 1/2... we discovered an issue because he will get fevers that are 102-104 and last around 11 days. have they ever checked the size of his red blood cells?