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.

Friday, September 26, 2008

Great news....I have nothing new to report! feels great to have nothing new to fill everyone in on. Livvie is doing great. We went back to her endocrinologist...and not much has changed since the last time. He kept all her meds the same and ordered a few new labs...but other than that, he was very happy with Olivia's progress. He was quite amused by her new silly personality. She was literally bouncing off the walls. =)

I guess this means we can take a little break from doctors for awhile. She doesn't have to go back to him for 2 1/2 months. Although she will be seen by Dr Davis, her neurologist, in October. I'll let ya know how that goes.

So, like I news if good news, right! Liv amazes us everyday with her improvements. She really is a happy little girl now! We have been waiting too long for that!

Saturday, September 13, 2008

"Aunt" Dr Belton

For all of you that have never met Livvie's wonderful pediatrician, here she is. This is Dr Belton. Sad to say, but I can pretty much guarantee that she has seen her Dr more than most of our friends and family. In 2006 alone she saw Dr Belton and average of once a week. 51 times in all!!!

Dr Belton has been through it all with us. Starting from when Olivia was newborn and jaundice. Pretty much as soon as that cleared up, we were jumping in head first into this non stop medical hell that we have endured for the last 3 years. At first, it was almost like a joke, she would walk in and give us the "you have got to be kidding me" look. Somewhere within the last 2 years and 7 specialist, it became a look of horror and disbelief. I could feel the frustration that she felt in not being able to put her finger on what was going on, even with the help of every "ologist" she could think of. She said she often looked over Olivia's chart during lunch breaks and after hours, scratching her head and pondering what it could be. During Liv's hospital stays she would call from her home and check on us, asking for all the details and trying to play "quarterback" for us. She decoded tons of medical mumbo jumbo that was thrown at us by countless Dr's and I can honestly say that without her, we would be lost. We could not have asked for a better Doctor. She has been a God send.

Liv's 3 year WELL visit to the doctors!

Well, Livvie had her first WELL visit ever yesterday. Yep, that's right...her first in 3 years. lol Sad huh! Every time before, we were always in for some illness or recheck and they always wind up doing all the well visit things during those visits.

Sooo...this is how it went...Livvie is now 40 inches (95%) and 35 lbs. They tested her vision and unlike me, she seems to have perfect vision. Her blood pressure was great, 84/52 ( good news since we will have to keep an eye on it because of the Florinef, salt pill.) And a little added co-pays for well visits! Yay!

Dr. Belton was happy to see Livvie in a great mood, which is a huge change from the old Livvie. She asked if it would be ok to share Olivia's story with the guest at a pediatric conference coming up. Of course, we agreed...if just one doctor has an "ah ha" moment and is able to diagnosis a child with Addison' will be well worth it. =) Liv's endocrinologist also asked permission to discuss Livvie at a national endo conference. He wanted before and after pics of her tongue and tan. What can I say...we always knew Liv was one of a kind...but apparently she is sparking quite an interest in the medical community.

Some other great news...I found a really great message board online that is for moms with children suffering from adrenal insufficiency. I have gotten tons of great advise, and about what to expect. It is a small group of about 10 moms, so they are all pretty close and all know each others stories. I am settling in nicely and it is so nice to hear from others with stories like ours.

Ok, so keep your fingers crossed...Dr Belton said she doesn't want to see us for a whole year! Other than Addison's related illnesses. We are really going to try to make it to our next well visit.

Monday, September 8, 2008

EEG...Not fun!

Well, I took Livvie to have an EEG today. Boy...that was not fun! It has been about a year since her last one, the infamous 24 hour one. This one only lasted about an hour, including the 15 minutes it took for me to get her calmed down enough to sit still while they placed the electrodes on her head. About 20 in all! They use this disgusting paste/gel to stick them to her head. We spent 3 minutes blowing a windmill, followed by about 4 minutes of strobe lights. =) After all that, they said, "ok, she can go to sleep now". lol Ok...a lot easier said than done. After about 20 minutes, she fell asleep. ( I did too) lol Ten minutes later...she said, "ok, we're done". She just had to take all the electrodes off her head. The paste left her hair a wreck!

Anyway, we survived another EEG and are waiting for the results. We are hopeful that this one will come back normal. If so, she will have to have a 24 hour one. If that one is normal, than we should be able to start weening her off her seizure meds. Yay! Keep your fingers crossed!

Wednesday, September 3, 2008 mold!!!

Well, as if things weren't complicated enough with Liv's health...we found more mold last night. This time it is through the drywall and paint in our room. The carpet was wet under both windows. We are waiting to see what our insurance will do about it. Hopefully this won't bring on any new illnesses. Keep your fingers crossed.

Wednesday, August 27, 2008

In case there was any doubt...Always a "Diva"

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.

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!

Friday, August 22, 2008

Olivia's First Health Blog...

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.