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About samsmom

  • Birthday 03/22/1999

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    washington state

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  1. I have been away and am amazed by the number of kids testing! Let me know if I can help. I have a bit of experience with kid cushings

  2. I have been away from the board for awhile. It looks great, Mary! I am so startled by the amount of kiddos currently testing! Please let me know if I can help you.

  3. Hi, They sure did get some mileage out of that show, didn't they? Glad you saw it and it lifted your spirits. It's become a bit difficult fo me to watch - so I'll be sure to avoid the channel for a few weeks. In regard to Sam; she is well... besides having to take replacement steroids for life and the caution that must come with that. In regard to her diagnosis... she had a low ACTH value and a clear pituitary MRI; this indicated an adrenal source. High ACTH would have indicated pituitary disease. The bilateral adrenalectomy is about as big a picture as Cushing's diagnosis go. Jackie
  4. I'll be happy to do it. Jordan said she would too. We could probably get Sam too; but she'd just talk about her horse. Let me know Mary. Jackie
  5. I'm not sure I get this. Is this a DIFFERENT kind of Addison's? Geezzzz, I guess I should stop telling everyone to creep up behind Sam and yell BOOO! That's one of our favorite things to do here... she never even bats an eye. "Your gonna have to try a lot harder than that..." she says. Sam has nerves of steel.
  6. Yep. Those are my girls iMAD. Nice to see they finally have a name for it ( though Bill has sugggested to Stratakis that he needs to use the acronym iSam- he loved the idea, but we can't think of wording).
  7. Here is the story with that. Sam was diagnosed with PPNAD a variant of Carney's Complex (a genetic disease). However, her path report (which was completed by J. Adien Carney himself) states she had Micronodular adrenal hyperplasia. There was no pigmentation as in Carney's tumors. Sam also DOES NOT have the Carney's gene. Either do her two sisters. They do however some other gene -PDA11A (I think) Stratakis discovered that my husband carries. Sam is/was the first child dx'ed with PPNAD WITHOUT the Carney gene. Though Dr. Carney feels they ARE the same disease. And now Jordan has it too. So as it is known now Sam and Jordan have/had "Stratakis Syndrome, a variant of Carney's complex, without pigmentation". And so it goes....
  8. http://www.ncbi.nlm.nih.gov/sites/entrez (Put Adrenal Hyperplasia and adenomas in your search bar). This paper is about Sam and her DAD and her tumors. Written by National Cancer Institute. It's number 18 down written by Horvath, A. I can't seem to link it up to this post. I can send the pdf file to anyone that wants the article in full. Adrenal Cortical Cancer causes Cushing's Syndrome.
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