Here we go...
Ok so this is going to be the place to come to find out the latest news regarding Livvie's health.
I guess I will get everyone up to speed as far as what we know so far.
During Olivia's last three day stay at the hospital for low blood sugar, we requested that they test her for Addison's Disease. A adrenal gland disease that my mom found online after seeing the geneticist at Shands. The first day in the ER they tested her cortisol and indeed it was low. That ment that her body wasn't responding to stress the way it should. They ordered a CT of her adrenal glads which came back that her adrenal glands were smaller than usual. Which by itself doesn't mean much, but in addition to a diagnoses of Addison's it could. They also order something called a ACTH stimulation test. They draw blood to establish a baseline cortisol level. They then put an synthetic version of ACTH, which is the chemical that tells the adrenal glands to release cortisol when your body is under stress. An hour later they draw blood again and see if her cortisol levels have gone up. Well, guess what...they said her levels stayed the same. Therefore we got a diagnosis! She has Addison's Disease ( aka Adrenal insufficiency). She was placed on Cortef ( a hydrocortisone tablet) and Florinef ( a salt tablet b/c her body has a hard time retaining required levels of salt).
Once home we started with the daily routine of crushing pills and slipping it into her yogurt of applesauce. She now takes half a Cortef pill three times a day and 1/2 a salt pill in the morning.
A week after leaving the hospital, we followed up with the endocrinologist. She then told us that Olivia had a high TSH level and that she also has antibodies against her thyroid which could mean autoimmune. She is currently being tested for Autoimmune polyglandular syndrome.
So, basically, there is a lot that we still don't know. One thing we know for sure though, is that Olivia is a differernt kid! In a good way! We have never seen her so happy. In fact she has recently taken up making a scene in restaurants, stores and just about everywhere else. Not temper tantrums if that's what you are thinking, but laughing fits! She will try to lay on the ground cracking up! Although a little embarrassing, we are so happy to see her in a good mood. Also I know many of you will be happy to hear that she is starting to put a little meat on those bones. She has developed a good appetite. I don't think she eats anymore than other kids her age, and in fact still might be less, but for her she has made huge improvements. Yay! She will even eat some meats. =)
Well that is just about all I know for now.
I will keep you all updated on the latest test results etc.
Just in case there was any doubt that Livvie is a total Diva...Here ya go. Proof. Even while feeling her worse with an IV in her arm and nurses coming in and taking blood and giving meds, she still finds time to demand foot rubs. lol Can you blame Mema for giving in?
She looks a little too relaxed here. I even see a bit of a smile! I have to say that is pretty sad how comfortable she looks. She has had more than her share of naps in those hospital beds.
Always a lady. =) Poor thing...look at her hand all wrapped up with an IV. At least they put pretty tape on it this time. Purple with flowers.