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 :)
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| Happy Feeding Tube Awareness Week (Feb 5-11) |
Hi Jodi, sorry to hear about your daughter's struggles. I wonder if her doctors have ever considered eosinophilic esophagitis? Granted there aren't many treatment options for this diagnosis, but to at least be able to put a name on the disease would be worth something.
ReplyDeleteHello - thanks for brining up eosinophilic esophagitis. Allie has actually been tested for it. Back in 2009, her first endoscopy showed several eosinophils but not a ton. Her second and third endoscopy didn't show any. We will see what her fourth endoscopy shows next Friday. Allie was seen by an ENT and Allergist doctor and they also ruled out EE. Of course it's always still in the back of my mind so they always take biopsies when they do the endoscopy. Praying they don't find any eosinophils this time either! Thanks again!!!!!!
ReplyDeleteHello Jodi - Was wondering if you have heard anything more about your daughters blood/urine work ups? My daughter labs came back with the same exact thing: ABNORMAL. Severe Ketonemia suggesting catabolic state."
ReplyDeleteShe has a f/u in June with the doctors. They said for now, just keep doing what I've been doing. What are they not telling me? Hope all is well with you and Allie. :)
Wow...i just received very similar results from my sons testing. He is 5 and has had a feeding tube for 3 years, with only a diagnosis of failure to thrive. I would love to talk with you more about our children!
ReplyDelete-Shauna
Hey Jodi, I know it's been a while since you posted your last update, but my son and another little girl in Atlanta present the same way as your daughter. I'd/we'd love to find out how things are going now? What you guys have found out about Allie's metabolic condition?
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