Sisters With Addison's Disease

Olivia was diagnosed with Addison's disease at almost 3 years old in July 2008. Little sister, Kinsley, was diagnosed with Addison's @ 7 months in Feb. 2011. We now know they were both born with it! Addison's Disease is an extremely rare disease occuring in about 1 in 400,000 people. Also called Adrenal Insufficiency, the adrenal glands do not produce cortisol. Cortisol is a hormone essential to life, and effects almost every organ in your body. It helps your body cope with any type of stress, both physical or mental. It often goes undiagnosed until an emergency situation called an Addisonian Crisis. With lifetime daily steriods (Hydrocortisone) both girls are expected to have normal, happy lives...just with a little extra precaution and lots of extra love. We are so thankful both our girls were disgnosed before it was too late.

Monday, August 25, 2008

Latest news from the Endocrinologist...Monday Aug, 25 2008

Ok, so I just got off the phone with the old endocrinologist who saw Olivia while she was in the hospital. Good news the long chain fatty acid test came back and shows she Livvie does NOT have ALD ( Adrenoleukodystrophy). YAY! We were really scared about that test. She also said that another test came back with in normal range which most likely rules out Autoimmune. Also great news. Her thoughts at this time are that Olivia has Adrenal hypolasia. ( I am a little confused about this because when I googled it, it doesn't really sound like anything we have come across, as far as symptoms but I don't know. I'll ask the new doctor) This means that she was born with small adrenal glands and at first it didn't pose a problem because they were supplying enough cortisol, and as she gets bigger, her adrenal glands aren't producing enough to keep up with her. This is why her disease seems to be evolving and progressively getting worse.
She said that Olivia seems to have Primary Addisons disease which means that the problem is from her adrenal glands and has nothing to do with her pituitary glands. I asked about her thyroid since the test results before showed high TSH and thyroid antibodies which usually means Autoimmune...since she said that Liv doesn't seem to have autoimmune, and she said that it is something they will have to keep an eye on. (Which I think really means that she has no clue).

So anyway, over all, today's news was good. No ALD and No Autoimmune. =)

We should have more labs back from the new Endo next week. I'll let you know what they show!
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1 comment:

Mema said...

I agree with you Amy, Yah! Good news from the endocrinologist. I'm also anxious to hear what the new endo has to say about the test results and the labs. I am so hopeful that the mystery of Olivia's health issues has been solved. Olivia is really showing great improvement since she's been on the medication. Her little personality is blossoming --- she's happy (giggly to be exact), she's energetic (sometimes too much), she has a great appetite, she's becoming so talkative and independent. It's wonderful to see her so healthy! Love 'ya little ladybug!

August 26, 2008 at 11:31 PM

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