Further Medical Words

Updated information about our favorite little red-head, from Grandma:

At this point U of M Mott's Children's Hospital has had two or three tests come back with the same diagnosis for Zoe. They are now saying she has VLCAD or very long chain fatty acid oxidation disorder. This is kind of back where the doctor's here thought it might (but hoped it wouldn't) end up.

To explain this in simple terms, we all use the glucose from food eat first as a form of energy and when we run out of that we use the fats we have eaten. Zoe's body cannot use the fats efficiently or at all, especially those that are of the long or very long chain variety. So when she depletes her store of ready energy or goes a long time in between eating, her body has a crisis. That crisis would occur every night if she did not get nutrition all night long.

The other time that it is critical to watch her is anytime when you might not feel like eating ie. a sore throat, the flu, a fever, a cold. In this particular disorder the fats attach themselves to the heart and liver and maybe some other organs, which can cause further complications.

It is considered under the mitochrondial disorders and is a rare genetic type of thing. I am not sure how the low blood count and needing transfusions works into all of this.So far we know that she is the only known case in Michigan. And that there is a doctor at the Cleveland Clinic that is known for working with fatty acid oxidation disorders. Zoe's doctor here is contacting him and would like him to see Zoe and consult on her case. This is causing some concern and unhappiness at U of M. This doctor is speaking at a conference in Pittsburg the middle of July and we are going to go hear him and others talk about this whole thing. As far as daily life goes, she is doing great on the days when she is out of the hospital and she would continue to amaze you with her spunk and spirit. She seems to be going through a nice period where it is about 2.5 - 3.5 weeks in between hospital stays. Which is good.

The only thing I have noticed with this is that she usually needs to stay in a little longer than she used to once she gets to the point of needing hospitalization. I am still supposed to finish up some genetic testing at U of M to see if this will shed any light on her condition. It is good to get some answers and move ahead.