Thursday, July 29, 2010


I got the results of KayTar's LFT recheck labs yesterday. THIS time her ALT is mildly elevated and her AST was at the high end of normal. LAST time her AST was mildly elevated and her ALT was within normal limits. Aye yi yi. More abnormal and nonspecific results!

However, I was doing some reading and it sounds like this is a typical laboratory finding in kids with GSD 0, which genetics is currently working her up for. Interesting. Of course, none of her doctors put this together.

Endocrine called Gastro (quick aside for you non-medical folks: gastroenterology also handles hepatology, hepatology focuses on the liver, LFTs are liver function tests) about the results, since they were still abnormal. Gastro wants them checked a THIRD time and will order further testing if they are still abnormal. Anyone want to place a bet?

Today I called Genetics to let them know about the test results, in case they need to tack some other test on to the retest panel. All of the clinics run off the same system, but unless someone CC's them specifically, they won't look at any labs but the ones they ordered until her next appointment, so if I want labs to be condensed into as few sticks as possible, I should probably let them know.

I'm I'm in a little bit of a funk. It's not because KayTar's labs were abnormal, I mean seriously, they are ALWAYS abnormal. I'm not worried. Maybe it is because I still CARE that her labs are abnormal, that there is still a little part of me that is always hopeful that this will be the set of off-kilter labs that breaks the case, that someone will pay enough attention to connect the dots and figure this out. Doctors look at constellations of symptoms to make a diagnosis and by this point, we're looking at an effing GALAXY full of them. Four years worth of them. This Sunday is my birthday and all I want, still, after all of this time, is for someone to look up into that metaphorical sky and finally recognize what it is that they are looking at.


moplans said...

ugh. I wish there were something to say that might make this easier. I know that feeling of wanting to know and I so related to this:
"that someone will pay enough attention to connect the dots and figure this out."

I just fired a bunch of people. Maybe we should talk bc it might make you laugh :)

moplans said...

maybe we should get a friendly competition going. We could call it Stump The Doctors!
But since mine get blindsided by strep throat lately that might not be fair.

katrynka said...

I admire how you have kept such great track of things and researched so much. I personally think the doctors are as far as they are because of your diligence.

Gwen said...

This is when it would be helpful if Dr. House were a real person.

It's hard to live without definitive answers, isn't it?

Magpie said...

i hope you get your birthday wish.

~aj~ said...

We only experienced 2 months of the waiting misery. I can't imagine 4 years, Kyla...just can't imagine. I hope your birthday wish comes true soon...very, very soon.