bloodwork news

I just spoke with Pierce's geneticist to get some clarification on a few questions his neurologist had. The respiratory chain enzyme assay was completed. He plans on doing the mitochondrial DNA bloodwork in the future. Pierce does not have any Inborn Errors of Metabolism.

And the great news is that his medications are working! His ketones and amino acids are back within normal limits! Pierce's CoQ10 levels were lower than Dr. N wanted to see. His level was 271 and he wants to see it in the 300-400 range. He is fairly confident that it is most likely in that range as he upped Pierce's ubiquinol dose from 0.5cc to 1cc twice daily (back on March 7).

Yay for some great news :) I will take it however it comes in whatever amount - small or large!

As for Brice, his nuclear gastric imaging study has been moved to Tuesday morning. I was attempting to research what to expect with this particular test. While reading CHOP's website, I noted that they stated you cannot have an upper GI series 48 hours prior to nuclear gastric imaging. I had already placed a call to the imaging center to speak with a tech on what to expect. When they called me back, I explained to her what I read and she didn't feel it would interfere but said she would check with the radiologist just to be sure.... well, sure enough, it could cause inaccurate counts on certain images - (one point for me!) - they were able to squeeze him on Tuesday morning.

He has to be NPO for 6 hours prior to the study (including pain meds)... Here's the laughable part of all of this: Brice will eat a radioactive scrambled egg (made in a microwave)... he will have 10 minutes to consume it (not sure how that will go, especially due to his lack of appetite)... and here's the kicker, the ideal way to perform this test is for him to LAY STILL for 90 minutes! If {more like because} he cannot stay still, they will take images every 15 minutes. We will have a 2-2.5 hour break (while still NPO) at which point we will return to have another image taking at the 4 hour mark.

We will have his swallow study and upper GI series the following day.

His GI is out of the office all next week. I am hoping his partner will interpret the results so I can get some answers next week instead of having to wait. We will see :)