Originally Posted by cissa4
My son is 2 1/2, and I've been told that even in a rare disease group, my son is rare. His fevers are pretty much all the time, and so far we have seen no pattern. While there are some PFS's that do not have set patterns, they are still "periodic" in that they come and go. In a month we're lucky to have 5 days of a normal temp. His other symptoms include fatigue, alternating bouts of constipation and diarrhea, and we're guessing muscle/abdominal pain. I say guessing because at his age it's not like we're getting a detailed acount!!!! LOL We're just going on his actions, tears, and irritability. He did tell us for the first time the other day that his tummy hurt. I have read that for the PFAPA that sometimes a tonsilectomy does work; however according to studies they have no idea why and so it's not an automatic procedure when diagnosed. I've read both ways from parents that have gone through with it. Some have great success with no more fevers, and others go for a while and then the fevers return. If I remember correctly though it doesn't work for the hereditary periodic fever syndromes.
Hi Cissa, Does your son have problems with his stomach between fevers? I've been doing a lot of reading about food allergies and intolerance, and I wonder if he could have food sensitives on top of his periodic fevers? 3 weeks ago we tried taking our son off of all of his foods he tested positive for (using the atopy patch test), hoping it would help stop the fevers, but it looks like it's not working this time.
I also have been wanting to write about my son who will be 9 in August. Last February, he had a serious bout with strep (positive quick test at the ER) that took two rounds of antibiotics to wipe out. However, after that, he started having periodic fevers, usually about 26 days apart, although there have been a few times that lasted less than this and once longer. It always starts the same way: chills, low grade fever that slowly builds to around 103-104, red swollen throat (but not sore), white spots on throat and tonsils, no appetite, malaise, and headache. He doesn't usually have any other symptoms, although we're in the middle of one right now and his nose is itchy. The fevers last around 4 or 5 days and are worse in the evening than in the morning. He is normal the rest of the time, although I have noticed that his appetite has lessened since all of this began. His brother and sister never come down with this. And he's been cultured and quick tested--always negative for strep. We went to an immunologist last month who mentioned cyclic neutropenia, but when she saw his blood work (taken at the end of the last time), he was slightly anemic, had an equivocal results for Epstein Barr, and had a sedimentation rate of 27, and she seemed to think it ruled out cyclic neutropenia, although I don't think this was thorough enough. We are waiting on his cbc from yesterday to see what it looks like at the beginning of a cycle, since he started getting sick a few days ago.
Has anyone had a child who started having symptoms later than the preschool years or infancy? Thank you for your help! This whole experience has been so terribly worrying. Stacy