Re: My child was diagnosed with periodic fever syndrome but not growing out of it
I have a 10-year old son who has been dealing with some type of fever disorder since he was 4-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.
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.
Hang in there and stay on the doctors to make sure your daughter's fever issues are addressed. I know how hard it is, we just have to keep doing our best to make sure their quality of life (and the parent's stress) do not suffer.