Wednesday, December 21, 2016

A Tessie Update

Patch had his well child checkup today and I managed to wait until the end of the appointment to ask if he could explain to me what high ammonia levels in Tessie's blood test results meant and what the neurologist is looking for when he sent the amino acid and organic acid tests to Mayo Clinic. And he was awesome.

 He explained they're sending them there because they're the ones who run that test, because it isn't common, and that he's worried about a urea cycle disorder, which is a genetic metabolic disorder. 

The good news though, is he brought up her chart and looked at the levels and said that she had gotten a 55, which is abnormal, but that when he's seen kids with urea cycle disorders their numbers were in the hundred to thousands, so relatively a 55 isn't that bad.

 He said that if I thought she was worse that he would admit her, but since she's actually seemed slightly more alert this week I think we're seeing an improvement over how much she was sleeping before.

 We won't get the new results back for a week or two but compared to how worried I was yesterday this is a definite improvement.

And that is the latest Tessie update!


  1. I think it's great that they are checking even a "little" abnormality, because you don't want something to go unnoticed. Better to find out it's "nothing" rather than not know and damage occur.
    My friend has a son with that disorder over 30 years ago. As an infant and child he needed to take daily medication, but grew up to be a fine, normal young man. I image he still needs the daily meds, since they compensate for the genetic abnormality, but I actually don't know any details about his health status now. He seems to be healthy and fine.

    I'm glad you were able to find out sort of where they are going with tests and so on and what you are possibly dealing with. The known is a lot easier to deal with than the unknown... :-)

    God bless and Merry Christmas! (I bet the older kids are nearly jumping out of their skins with excitement about now...!)
    ~ Bonnie

  2. I didn't even see the previous post before but I am so happy everything is on the okay side and not the "super scary" side. Praying for your beautiful family!!

  3. Thank you for updating us, and praying that whatever is going on with Tessie, it has a simple "fix"!


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