My 16 year old daughter has had a 1:320 positive ANA titer 3 times in the past year, but has no official diagnosis yet. She has occasional upper abdominal pain, exhaustion, and sunburned look on upper cheeks. Abdominal CTs negative. Any ideas?
They have tested her for a number of Auto immune diseases and ruled out a lot of stuff like Lyme Disease, Crohn's, Colitis, Autoimmune Hepatitis (she had liver inflammation and was hospitalized last year but all panels have been normal since). I'm not sure what's left...just getting frustrated. I don't know how to help her feel better.
She is now seeing a rheumatologist, but was working with a GI before when they thought it was IBD related. She had a hospital stay for inflammation of her liver, but all liver panels have been normal since. I like this rheumatologist, but am having a tough time with the "wait and see" approach. She's been sick for just over a year now, and I just want to help her feel better. Even if there's technically nothing we can do, it's hard to reassure her when we don't even know what it is.
Mollynomar, a friend of mine has had "non-alcoholic fatty liver" for years. It's only one possible cause of liver inflamamtion. I think Wilson's disease is another, but I know so little about liver conditions! All I'm saying is that there are other things than hepatitis possible.
I had years of chronic GI problems, too. My drs. also ruled out Crohn's, colitis, etc. But after starting Plaquenil, my GI problems cleared up very quickly, which I found amazing, after all those years of misery. You read so little about GI problems in lupus---drs. talk instead about fibromyalgia. Yet my big-city rheumie wasn't at all surprised at how long my problems had lasted or how severe they'd been.
I hope her new rheumie can figure out what's going on quickly. And if her liver enzymes go off again or if she has symptoms that seem liver-related, I hope you forcefully request a liver specialist (hepatologist). Sending your daughter & you both my best wishes, sincerely, Vee
CLARIFICATION: "Hepatitis" is a generic term for liver inflammation, which can have different causes. I didn't say that clearly yesterday, sorry, Vee
Last edited by VeeJ; 11-27-2009 at 06:36 AM.