Medical Drama Update

February 12, 2007

It's been a whirlwind of appointments and lab work with some good and some bad news. The good news revealed Gillianne's eyes are working great! We had to have a full exam based on her joint inflammation and undiagnosed metabolic disorder.

We then followed up with Nephrology (Kidney Dr). Since she no longer has the fructose intolerance diagnosis they also decided to remove the renal tubular acidosis diagnosis. It's with mixed emotions I take her off the bicarb medications as her health has been so good since treatment. But we did and we will check her blood work again in 1 month to make sure it's holding without meds.

Now, the bad news. They also did a liver panel to check her liver function since we know she had fibrosis (scarring of the liver) on the pathology report from the biopsy. Her liver enzymes are the highest they have ever been! Our pediarician is not happy with not getting answers so she is now sending us to a GI specialist. Appartanly they follow liver patients. I have a sneaking suspicion however, they are going to look at her chart and tell me it's damaged due to a metabolic disorder and to go see a geneticist. THAT won't make me happy because he doesn't have answers either.

So that's her health update for now. We still know nothing other than something is making her sick.