- CASE FILE
My 16 year old daughter has had an undiagnosed type of autoimmune or auto inflammatory (we suspect) disease since the age of 8.
ABOUT THIS CASE FILE
My daughter has had chronic mouth ulcers (on tongue, throat, inner lips) for 8 years. They almost never completely go away and she has a lot of scarring in her mouth. She has flares when they get worse and she has fatigue, malaise and joint pain. This can go on for several weeks. It affects her eating and drinking and this causes her to get very weak. She has had epstein barr virus twice. She also has very frequent thrush and yeast infections along with chronic UTIs. She has frequent rashes as well as discoloration of her legs and feet. They can turn purple or bright red. If she is active in any way, the next day she is completely wiped out and she can't get out of bed. She usually has to take steroids to get any improvement. She has not been diagnosed officially with anything. They have done all kinds of labs and tests on her which have not shown anything that would point to a diagnosis. She has seen numerous doctors and we traveled to the Mayo Clinic in Minnesota in 2017 but she had mononucleosis at the time and they couldn't do more tests on her. We have had to do homebound school for the past 3 years because her quality of life is so poor. Her rheumatologist suspects behcets disease but there is no test to confirm this. She doesn't fit the description of someone that usually has this rare disease. Her previous rheumatologist put her on colchicine but it caused diarrhea and she didn't have much improvement of her sores. Her new rheumatologist put her on Imuran but it caused her sores to be worse and she has frequent thrush and yeast infections so we had to stop the medication. She has had several EGDs and colonoscopies to check for ulcerative colitis and crohns disease but the only thing they found was a gastric ulcer that they thought was from ibuprofen usage. She has been dealing with this for a long time but there has not been a diagnosis so therefore the doctors we have seen are hesitant to start any medication on her. This chronic illness has caused a lot of anxiety and depression as well. She recently had a tonsillectomy in the hopes that it would resolve her symptoms but it has not prevented the ulcers from occurring. This illness has really taken her childhood away and I keep praying there will be something that could make her better.