Re: Respiratory symptoms with PFAPA anyone?
Currently my son has not been diagnosed with PFAPA, but I'm pretty sure that is what he has. So far we have done the following:
-Genetic testing for various flavors of Peroidic Fever (waiting on results, one came back negative so far)
-Spinal Tap, showed no bacteria
-Never any step, bloodwork just shows slight signs of possible virus
-Tons of bloodwork
-He's very healthy otherwise.
This has been going on since he was about 9 mos and we noticed a pattern just after his 1st b-day. His episodes are about 22-24 days apart, but this last one was 20 days apart:-( Each healthy day counts!! He is now 19mos old.
Yes, my son has labored breathing during the episodes. I have dismissed that because of the chronic crying durning attacks and just the exhaustion he experiences during an attack. He tends to have a very slightly stuffy nose during attacks, but his lungs and heart always sound good to the doctor.
Our next stop is Childern's Hopspital in DC. I called them and their Pediatric Immunology Dept has LOTS of experience with these kids. A doc readily talked with me on the phone about the disorder.
I have heard getting the tonsils removed sometimes helps, after the doc runs a few more tests and if nothing still comes back, I will JUMP at the opportunity to remove the tonsils. We are desparate for some relief. Sometimes I feel like I'm going insane...I'm having such a hard time holding down my part-time job and don't know how much longer I can keep it together.
It feels so good just knowing other parents are experiencing this with their tots.