Thursday, August 20, 2009

Evidence Proving What We Have Thought All Along

This post is long overdo:

We have been gathering evidence (mentally and on paper when we can) to confirm or refute that Sarah has CPT II.

We went to the metabolic doctor at the end of July and the doctor said that she had reviewed all of Sarah's test results and restated our thoughts that we have had since this ordeal started. Her first 3 blood tests were borderline and all following tests, DNA and blood, returned normal. So she brought up the ideas of letting Sarah sleep through the night, stop giving her carnitine, and wean whole milk into her diet. Basically, start treating her like a "normal" child and see how she reacts. Sarah got blood drawn that day for an enzyme assay and we are still awaiting those results. She will be getting blood drawn at the end of this month and the next to test her carnitine levels to see if they are remaining in the "normal" zone.

Sarah is now sleeping through the night and waking up active and cheerful when we get her out of her crib when she awakes. We are still trying to keep her diet low fat for now but we have let her try some new things (without feeling guilty) like hamburger, hot dog, and some food when we are at restaurants. She seems like a normal kid. No behavioral or physical differences.

Praise God!!!!!!!!!!

Then, on Aug. 4th, I received an email from a research study that I had sent some of Sarah's blood to. This email said that based on their research study tests (blood and full DNA screening) it looks that Sarah doesn't have CPT II. There were disclaimers warning that diagnostic testing should be done outside of this research study, but still, it is more evidence proving what we have thought all along.

Praise God!!!!!!!!!!

We are curious what the upcoming test results will show and how it might affect our situation. But for now, we are enjoying this time.

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