Oh fever episodes...what are you!?

It's been 9 weeks since Brayden had his genetic testing done for the recurrent fevers that he's having.  For those who aren't familiar, he gets high fevers every 4 weeks that last 5-7 days. His temp ranges from 103 to 106+ WITH meds. The fevers are accompanied by no other symptoms and he's been tested for all kinds of sickness from strep, pneumonia, UTI/kidney infection, viral and bacterial infections.  Anyway we went to the immunologist in March and the only thing we could come up with was Periodic Fever Syndrome most of the forms of this are genetic he decided to do a round of genetic testing to see what came up. We were told it would take 6-8 weeks to get the results.

So the results are in and we are at a loss.  The Dr said that he came back negative for all the genetic forms of periodic fever. I know it sounds bad that I'm a little upset its not one of the genetic forms. We were hoping that we would FINALLY have some answers and  be able to start some kind of treatment to help him start feeling better. I'm glad it's not genetic at the same time but now we are back to square one. There is one form of PFS that is non genetic (PFAPA) but that usually accompanies a sore throat and/or enlarged adenoids and/or mouth sores. He doesn't exactly fit that profile with some of it. He always tries to refuse food and drink when he has an episode so i can't rule out the sore throat, but I don't know if his adenoids are enlarged at the time of an attack. Guess we will see what the dr thinks. So obviously the next step is heading back to the immunologist.  I was thinking we would have to wait weeks to get an appointment but the dr actually had some cancellations for tomorrow! So we have an appt at 10am at CHOP.  Here's hoping we can figure something out or what the next step is. I HATE seeing him so sick every 4 weeks. Such high fevers take so much out of him and they just plain scares  the hell out of me. I just count my blessing b/c we're lucky he doesn't get febrile when he gets them.  Wish us luck tomorrow.  Apparently little man likes to do things difficult like his mommy :/

NO one likes to see a sad face like this :(