I received a copy of her blood work yesterday and it looks like this:
"Creatinine" - low
"Anion Gap (mEg/L)" - high
"Carnitine, Free" - low
"3-OH-Butyric Acid, Plasma" -extremely high
"Acetoacetic Acid, Plasma" - extremely high
"20 Ketoisovaleric Acid, Plasma" - high
On top of the report, there was a section called "Organic Acids, Plasma Interpretation". This is what it says. "ABNORMAL. Severe Ketonemia suggesting catabolic state."
Not sure what all this blood work means but I'm not liking it. The doctor called and had us go in on Tuesday right away for additional blood work and a urine test. They are now checking her organic acids and checking for sugar in her urine.
I have been doing a little research on her test results but I haven't been able to find a ton of information. Her doctor won't tell me much until the next round of testing comes back, my guess is he doesn't really know yet what it all means.
We should get her new blood work and urine test back hopefully on Monday. Waiting is sometimes the worst part!!!
Overall, Allie is doing good. She has stopped vomiting since being on the new medication. In addition, her behavior has improved dramatically. She still refuses to drink anything besides water but that's why we are thankful for her feeding tube :)
Happy Feeding Tube Awareness Week (Feb 5-11) |