Moody/Karens daughter Olivia

faith, that is a BEAUTIFUL cake!!!  Please dont tell me you made it!  I swear I could jump into the screen and eat it!

estepp   they break our hearts when they leave us dont they.  But the time we get with them is priceless!

Holding Olivia up in prayer this morning.  Hope she has a good day.  My oldest cat Sissy, the sweetest most loving one has disappeared, which makes me so sad.  My dark one bear with a white ring around her tail is pregnant.  I would make you a real cake but I would have to eat it. LOL

Moody, what is Olivia's favorite color.  I would like to make her a get well necklace to send to her.

Hope she has had a good day today.  God bless. 

Sherry

Popping thru with continued prayers and wishes for a great weekend @ Wake Forest.

Camille is such a blessing to you & I'm so happy for that.

xx00xx00xx00xx00xx

HAPPY MOTHERS DAY TO YOU KAREN

Praying that Olivia is getting better everyday.....and will have a great summer....

((((hugs))))

So today I was reading an article in "People" magazine about Brian Littrel's little boy.  Brian was a singer in the band "The Backstreet Boys".  Anyway when his son, 6 years old spent a few weeks at Scottish Rite in Atlanta also.  Check out these excerpts from the artivle and see if any of it sounds familiar  (NOT the disease---Olivia DOES NOT have ANY on these symptoms, just the story):

"It took doctors almost two nerve-racking weeks to correctly diagnose Baylee. "You feel helpless as a parent because you're relying on people who are educated about these things," says Brian, 34, of the frustration he and his wife of eight years felt as doctors tested for, then eventually ruled out, strep throat, hand, foot and mouth disease, and an allergic reaction to antibiotics. Although Baylee was traumatized by the needles and tests, he remained in good spirits, which comforted his parents. "

"But "I knew there was something really wrong." So she spent hours online researching her son's symptoms and even suggested to doctors that it might be KD. (John Travolta's son Jett, who died at 16 following a seizure, had the disease as a child.)

But that too was initially ruled out because Baylee's case wasn't typical. "Everybody doesn't come in with textbook symptoms," explains family friend and pediatrician Greg Cabrera, one of eight doctors who worked on the case. "Baylee didn't fit all the criteria. It was very, very difficult."

"They insisted that doctors at Children's Healthcare of Atlanta at Scottish Rite hospital perform an echocardiogram-an ultrasound of Baylee's heart-which solved the mystery and may ultimately have saved his life. "Without the echo they were going home that day," says Cabrera. "It stopped everybody in their tracks." (In a follow-up visit, the Littrells say Baylee's cardiologist told them the chest sensations Baylee still feels are unrelated to KD.)"

"Meanwhile the Littrells hope other parents can learn from their experience. "Never give up," Brian says. "Doctors are not always right, but they are there to help. Be an advocate for your child."

This is just pieces of the article, but boy I wish you could have seen my reaction when I saw "2 weeks" and "Scottish Rite" and "being an advocate"!!!! 

What blows my mind is that this hospital is SUPPOSE to be the best in the southeast USA!!!  I suppose that our case and their case could be to isolated incidences, but in my mind, that's two too many!

Happy Mother's Day to all~~~and hugs to little Olivia!

My gift to you~~~

http://www.lshs64.com/enjoytheride.html

Love,

Daffodil

Happy Mother's Day Karen! I've been following along with your story and have been amazed at your strength and faith! This morning I was reading a local hospital magazine thrown on my kitchen counter and immediately thought of Olivia's condition. Have her doctors ruled out a condition called "gastroparesis"? Here's a link with info on the condition:

http://www.mayoclinic.com/health/gastroparesis/DS00612

The article describes how a woman suffered for years with nausea and weight loss until they diagnosed her and implanted a gastric electrical stimulator (like a pace maker for the stomach - it's approved only for limited use by the FDA). Her stomach didn't get the right electrical stimulation telling it to completely empty so the stimulator worked for her. The doctor who helped her was a Dr. Brad Dworkin, Associate Director of Westchester Medical Center's Division of Gastroenterology. He says this condition is common with people with diabetes, vascular disease and endocrine disorders - but it also occurs in people without these conditions - 3/4 of them are women and they don't know why.

I'm sorry if I'm going over ground that you've already been over - but I just wanted to be sure that Olivia's doctors are truly helping her and not overlooking this diagnosis.

Again have a wonderful Mother's Day!

swimangel, thanks for the info and link.   That is sort of what Olivia has, but at this time, they believe it is not the primary problem, but the result of a diff issue.  Here is my update from today's visit.  It is possible that she might end up with the gastric pacemaker, just not anytime soon. 

Here is my update:

Olivia's appointment today at Wake Forest University was another success!  We just love Dr. Fortunado, and he truly seems to adore Olivia.  He loves picking at her and when she gives him the "you are strange" look he just thinks that is great!

So he went over in detail her two tests, the EGG (electrogastrigram) and the table tilt test.  The EGG was "all over the place" he said, showing us the rhythm lines.  He said the thing that made her case so unique was that her rhythms are very mixed, going from too fast, to too slow, back and forth many, many times.  He said they look for at least three dysrhythmia's in a certain amount of time, and she had too many to count.

So he called and conferred again with Dr. Koch, the "head honcho professor" at Wake Forest leading the studies on gastric dysrhythmia's, and the "head orthostatic doctor" at John Hopkins.  After looking at the whole picture, they are still in agreement that the orthostatic issues (the POTS) is causing the gastric dysrhythmias.  The crazy thing is that she is the first patient, adult or child, with mixed ones.

Dr. Fortunado then told her, she just earned her place in the science books!  He said that the three docs have chosen 20 adolescents, ages 10 - 18, to include in their studies and her case is "definitely" one they are including in their teachings and conferences.  He said they have this "big Olivia Moody" file ......LOL  Then he said "in all seriousness"  that in addition to the EGG and table tilt results, she was also chosen because of her, and I quote, "EMOTIONAL STABILITY".  

He said this was why he spent so much time "grilling" her during the first appointment.  It was necessary to determine her emotional state, both with the illness and the fact that she is a "pre-teen".  Doc said she "passed with flying colors" and that "but for the intense nausea and dizziness, she is a perfectly normal, healthy, happy kid."

He wants to continue the current treatment for now to give the higher dose of meds time to work.  If she is not seeing any improvements by the next visit, other treatments will be considered.  The best news is that she is up to 85 lbs now, so doc said "no tube up the nose!"  He said his goal was to get her back into her dance classes by fall.

With all this said, we will see Dr. Fortunado on a bi-monthly basis for now, and he is going to work with our regular pediatrician, Dr. Johnson, for monitoring and medication adjustments.   

Oh Hallelujah!!

On so many levels.

A specialist with a heart of gold -- and listening ears -- and connections to others!!!

There is good that will come from this.

"We know that for those who love Him, for those called in agreement with His purpose, God makes ALL things work together for good."

goooooodness gracious sakes alive.......

this saga would never be believable in a movie version -- too much drama.

prayers now for the good doc: safe & quick return. Marines? holy cow.

Prayers going out for Dr. Fortunado and you and your whole family.  what a lot this poor child has been through.  What medicine did they end up putting her on?  You can pm me if you want.  God bless you Moody, stay strong and keep the faith.  love and hugs sherry

Thanks ladies!  She is taking "Florinef" (I think that is the correct spelling) 2 x's a day.  She started with 1 x a day and cardio doc increased about 2 weeks ago.

It is a steriod and the same one that athletes abuse..........it is making her skin break out but she doesnt care (so far) and it does make her a bit more moody (and she will be 13.........) but if it does in fact help her, then worth it......I suppose.

Karen, that's what Walmart Supercenters are for.  Go to the nearest and get a pair of jeans and tennis shoes cheap.

Karen, that is weather here in the springtime. Sometimes you don't know if you need to dress for winter or summer. It all depends on where the High and Lows are positioned. Although we were glad to see the rain after 2 yrs of drought conditions. I did come to work yesterday morning with a 3/4 length sleeve top on before it started raining but when I went home at lunch, I picked up a sweater.

This morning I woke up to 48 degrees outside and high temps today are expected in the 70's.

Glad to hear of the good report at Wake Forest. When I was 11 and had major back surgery, the doctors at Cleveland Clinic had my parents sign release forms to put my case in some of the medical journals because it was the worst case of scolosis that they had seen.

Sheila