- CASE FILE
18 yr old son has GI & Resp. problems since 4 yrs old. Been seen at CHLA and UCLA. Currently no DX. Extreme pain SPO2>75 fever rash fatigue
ABOUT THIS CASE FILE
Our 18 yr old son has been undiagnosed for 14years. We've been to CHLA and UCLA and we don't know where else to turn. Kade will wake up in the middle of the night with excruciating stomach pain. He ends up with diarrhea, sometimes with blood in his stool, he has shortness of breath (SPO2>75), along with many other symptoms. These attacks can last anywhere from 30mins to hours. Kade has had 7 colonoscopies, a double balloon enteroscopy, tons of bloodwork, xrays, and scans. We've seen pulmonogists, GI's, ENT's, genetics, cardiologists, allergists, neurologists, rheumatologists....you name it, we've been there. He's had positive sweat test for CF but no genetic abnormalities, he's taken a Remikade infusion for months and high doses of steroids but to no avail. Right now they're treating him for asthma, but that doesn't explain the GI problem. Every MD we've seen is very enthusiastic abut helping us, but eventually tells us that "he has something very rare and they just don't have the tests for it." This has gone on for far too long. We need an answer. As his mother I'm begging ...PLEASE HELP!!!