Olivia's Prayer Thread

Lifting each other up.
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Re: Olivia's Prayer Thread

Postby Emerald » 23pm30America/New_York()

Sorry it has been so long since I have updated everyone. I have been very busy with work, websites and the new puppy…..okay maybe I listed in the wrong order….puppy is keeping me very occupied!

In addition, I have been so frustrated with Olivia’s condition and treatment, I have just been too annoyed to write about it. But here goes:

We went to the cardiologist Tuesday, spent 3 very long hours in her office. She was very sweet and spent a lot of time talking with us. She also did an EKG and an Echo cardiogram, just to be sure everything was normal, and it was.

HOWEVER……..Dr. Carpenter believes that Olivia’s table tilt test was a “false” positive, believes the fluctuations in bp and hr were related to dehydration, and does NOT believe Olivia has “POTS”……..UUGGHHHHHH

She believes Olivia has “Neurocardiogenic Syncope” a.k.a. “vasovagal syndrome” and that it is stemming from something ELSE that is causing nausea, but doesn’t know what it could be……...Are you kidding me???

So first, I’ll address the “false positive” issue. She said being dehydrated causes this…..they don’t allow eat or drink after midnight before the test, but they hook up i.v. fluids before and during the test. So I am totally confused……

Now I’ll tell you about Neurocardiogenic Syncope:

Known as "neurally mediated hypotension", is also referred to as "the fainting reflex", "vasodepressor syncope", "vasovagal syncope", or "autonomic dysfunction". In this condition blood vessels tend to expand, which leads to pooling of blood in the lower parts of the body.

In an individual with neurocardiogenic syncope, the reduction of blood return triggers a miscommunication between the heart and the brain.

Individuals that are prone to neurocardiogenic syncope manifest a spectrum of symptoms ranging from fatigue, vague lightheadedness, recurrent dizziness, near fainting, palpitations, nausea, unexplained sweating, joint or muscle aches, to the most dramatic "the faint". Some people may only have one or more of these symptoms but never progress to fainting.

• The first step in treating this problem is to increase fluid intake.
• If low salt intake is an issue, we recommend an increase in the amount of salt for patients to add to their food.
• Medications are designed to make the patient more resistant to the same triggers, especially if they cannot be identified or eliminated. Some drugs work by allowing the kidneys to retain sodium and others block the body's response to adrenaline, which can kick-start the blood pressure abnormality.
The question of what happens over the long term has not been adequately studied, and the optimal duration of medical treatment is still being worked out. Unfortunately, despite appropriate doses of the available medications, some individuals with abnormal tilt table tests do not experience a marked improvement in symptoms, and some are intolerant of the medications. In such people, the realistic expectation may be reduction in frequency and severity of symptoms rather than their complete elimination. More research on this problem is ongoing.

So, as you can see, it sounds just like POTS…….with the exact same treatment. But Olivia hearing all this, just deflated her bubble!!!!

Yes she was depressed and yes she was angry and yes she was feeling like it was all hopeless…..So the doctor suggested a Psychologist!!!!!!! DOUBLE UUGGHHHH!!! That really sent Olivia over the edge!!!! Olivia took it to mean AGAIN…..that it is all psychological, and it isn’t.

Her reaction was NORMAL!!! Who WOULDN’T feel depressed and angry and hopeless??? And she is only 12! I can’t imagine how the doctors think she is suppose to feel.

But I am no dummy either. If she were to start being ABNORMALLY depressed, angry, hopeless, I would drag her to a counselor in a second. These emotions are normal and are not affecting her everyday activities, she is still happy and talkative, just frustrated.

Why is it in North Carolina, docs understand the emotional issues associated with something like this, and assure her it will be figured out, she has every right to her feelings, and it will all be okay, but in Georgia, doctors say “I don’t know, maybe you need a counselor….”

Believe me, I am NOT against seeing someone when needed, I know exactly who to see, that is not the problem. The problem is, this is all she has heard since February EXCEPT from Dr. Johnson and Wake Forest docs. THIS is causing her more emotional stress than the illness is.

So, Dr. Carpenter is suppose to call and talk with Dr. Fortunado and we go back to see her next Thursday. She also suggested going back to the GI, I told her I won’t see anyone in Georgia unless they change their way of thinking……

And the saga continues…………………………….
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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Re: Olivia's Prayer Thread

Postby Mimi2 » 23pm30America/New_York()

Awwww, Em, I'm so sorry for you and Olivia. Ya take one step forward and 10 steps backward.

I still wished you'd get another opinion..one from Duke (I go to Duke for bc) or Chapel Hil Children's Hospital (besides, UNC Chapel Hill are the basketball champs this year...and one of my dds went there :uwink: GO TARHEELS!). They are the ones who found out that my little four month old niece had vertabrae missing in the sacrum (I think that's what the low low back is called). Therefore, she could not urinate and even has to take something to move her bowels. We were DEVASTATED when we found out..but all is fine. She is now around 10 years old and the school nurse taught her to catherize herself! She was soooooooooo proud! Her mom died a very few months after she learned to do this. I'll start crying so I won't say anymore.
Ecclesiastes 10:2 (NIV) "The heart of the wise inclines to the right, but the heart of the fool to the left".
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Re: Olivia's Prayer Thread

Postby Emerald » 27pm30America/New_York()

Dr. Fortunado from Wake Forest University called me this afternoon to discuss Olivia’s final test results and his recommendations. We talked for about 30 minutes and he was so thorough in his explanations and very confident in the findings. Definitely a nice change from our overall response from most doctors here.

Dr. Fortundao explained the table test and the EGG results. I will start with the EGG results because they are easier to explain. EGG stands for electrogastrogram and it measures rhythms in the stomach. If any of the rhythms are too fast or too slow, it can cause nausea. In Olivia’s case, her rhythms are abnormal in BOTH aspects. Hers go from too fast to too slow, then back and forth between the two. These abnormalities began with only 100cc’s of water (she had to drink water during the test). So she is having a “double whammy” of dysrhythmias causing the intense chronic nausea.

So of course the next question is why? The doctor said that he believes the orthostatic issues are causing the dysrhythmias due to restricted blood flow. I had misunderstood him before, I thought he said blood was pooling in her tummy causing the nausea, but it is actually that blood flow is restricted to the stomach and the brain, causing gastric dysrhythymia, the heart to beat faster and the blood pressure to compensate by dropping.

She does not have a “racing heart” issue so to speak. Yes her heart rate continues to rise as she is standing, but it is a steady rise that stays high as long as she is upright, but it is not erratic or irregular. Most of the time she doesn’t even know her heart is beating faster.

As I said before, as her heart rate increases her blood pressure tries to compensate by dropping. So why does all this happen in the first place? I am going to explain it the way I understood it, so I reserve the right to correct at anytime! LOL

Olivia’s circulatory system isn’t utilizing fluids correctly. This causes the blood vessels to constrict slowing circulation, and gravity automatically pulls the blood flow to the lower extremities. The heart isn’t getting the return it needs, so hence it beats faster and the other symptoms commence.

Dr. Fortunado is very confident that the table test is in fact positive, and of course it is a result of her circulations inability to use fluids properly. He discussed her case with his colleagues at John Hopkins, the Mayo Clinic and the head researcher, Dr. Koch at Wake Forest and all three concur with him, that Olivia’s chronic nausea is a result of the orthostatic disturbances.

He did, however, caution me that it is still possible that the gastric dysrhythmias are a separate issue that may have to be addressed, but he wants us to give the current treatment a chance to work first. This medication that she has been on for the past 10 days hopefully will begin to give her some relief in the next week or so. If it doesn’t, he will probably increase her dosage before trying to switch meds.

We are going back to see the cardiologist this Thursday, so it will be interesting to see if she actually called him and what she says. We go back to Wake Forest May 11th to see Dr. Fortunado.

I tend to have the most confidence in Dr. Fortunado, who is part of the research team for these types of unexplained chronic conditions. A team that consists of GI’s from John Hopkins and the Mayo Clinic. I have confidence in him because he speaks to me with respect and not as a “worrisome mother”. And most importantly, I have confidence in him because he assures me that Olivia’s symptoms are purely physical, and he promises to do all he can to get her better.

He said that unlike many of his patients, she wasn’t an emotional mess. He told me that so many kids pitch fits during the testing and have such high levels of anxiety. The only emotional “outburst” she had the whole time we were there was when they told her they had to start an i.v. for the table test. Yep, she was hysterical and everyone in Wake Forest University knew we were there. But once they got the i.v. in, she was settled down and was in a pretty good mood.

This concludes today’s episode of “As The Stomach Churns”.
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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Re: Olivia's Prayer Thread

Postby Mimi2 » 28am30America/New_York()

Wow, Em, you did a good job of explaining this stuff, but I still don't understand..it's the way our bodies work...isn't it something how God made our bodies!

I hope the med she's currently on works. The child deserves a normal life!

Was this something that just happened and why? Geez, our bodies are incredible! And then the become unkind to us...well, SOME of us.

WE KNEW it was NOT in this child's head. And I think she's one brave young lady. If I was going through what she's going through I'd be a basket case! Kudos to her for being so calm. You've done a good job there, MOM!
Shirley
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Re: Olivia's Prayer Thread

Postby cheri » 30pm30America/New_York()

I hadn't checked this thread in awhile because I thought her condition had been figured out and she was doing much better. I should have known it wouldn't be that simple with as much trouble as the child has had. I am so sorry that little girl, you and the rest of the family are having to continue to go through this. Hopefully, the meds will kick in and she'll start to feel better. One bright spot is the fact that you have a dr that you admire and seem to trust. That makes all the difference. Olivia is in my prayers, as well as all your family.
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Re: Olivia's Prayer Thread

Postby VoiceOfReason » 30pm30America/New_York()

Hi EM,

Poor Olivia. REgrding the IV's she has had to endure. Your Dr. can give you a prescription for EMLA cream. You put it on the area about an hour before and she won't feel a thing - you don't rub it in. They will give in instructions on who to use it.

I have had a spray seconds before an IV and it really helped, makes it feel like you hand is freezing.

Last hospital gave me a really tiny numbing shot and that helped.


I don't know why Dr's don't use these techniques more on kids.

I don't think I will ever forget trying to hold down and comfort my poor son while he was stuck over and over with novacaine in his little fingers before they could set a broken finger.

Thoughts and prayers to you
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Re: Olivia's Prayer Thread

Postby Emerald » 30pm30America/New_York()

Daisy Emla cream is AWESOME! I use it on my port before treatments......btw, ONLY ONE TO GO!!!!! WOOOO HOOOOOO I get my last Herceptin tx May 12th!!!!!

They use emla cream at Scottish Rite, the prob is they only give it 20 min to work, and it takes a min of an hour to work. I put it on 1 1/2 hours before tx and I don't feel a thing.

I use it on Olivia when I know she is going to get stuck. The problem at Wake Forest was, no one thought to tell us about the i.v. so when we got there for the testing, there wasn't any time to have the cream work. I keep it with me, but they couldn't wait an hour for it to work cuz it was time for the test. Oh well, it is over now.

HOWERVER, we went back to cardiologist today. She said she "never got in touch with Dr. Fortunado"......which must mean she never even tried, because he would have talked with her. I hate when people lie to me.. All she had to say was "I didn't try to call him". :roll:

Anyway, she has upped Olivia's meds, then told us we didn't need to come back to her anymore. She said we can just stay with Dr. Fortunado......... :shock:

I guess she didn't like the part about him confering with the docs at John Hopkins and Mayo and they were all in agreement. :tongue:

So, after we see him again on the 11th, I guess we will be looking for a new cardiologist.

Good news is Olivia is up to 82 lbs now! :clown:
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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Re: Olivia's Prayer Thread

Postby Silverleaf » 01pm31America/New_York()

What a beautiful girl and a beautiful dog, perfect for each other. Praying for you sweet girl.
Life is good and I intend to live it to the fullest
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Re: Olivia's Prayer Thread

Postby Emerald » 08pm31America/New_York()

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!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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Re: Olivia's Prayer Thread

Postby cheri » 09am31America/New_York()

Emerald, I can see why the article caught your attention. How is Olivia been feeling lately? Much better, I hope. It doesn't matter how old our children get we never stop worrying about them.
Cheri
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Re: Olivia's Prayer Thread

Postby Emerald » 11pm31America/New_York()

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.
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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cheri
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My Bio: Lumpectomy, Breast Reduction, TAC Chemo, 35 Rads, Arimidex

Re: Olivia's Prayer Thread

Postby cheri » 13pm31America/New_York()

Wow, Olivia is going to be famous...so to speak. The weight gain is such a good sign and I'm praying her meds will work. So glad you have a dr that you like and trust. Sounds like things are looking up.
Cheri

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