Moody/Karens daughter Olivia

Karen, let us know what they said at Wake Forest on Monday and if Olivia is on the meds yet.

Sheila

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..................................

Oh No Moody, what an awful lot for a child to go through.   The psychological part of it makes me very angry.  They don't know what they are talking about.  I too will be praying for you and Olivia. So sorry you guys are going through all this. hugs and love sherry

Oh for heaven's sake this is nuts!

As you were discribing all this, it sounded very much like something dd went thru but not as severe...first time she was about 12- syncopal seizure unknown origin (thankfully it happened in docs office) they had her in hospital (right across the street) for a few days. Lots of tests and scans, sleep deprived brain things, heart moniters etc. NOTHING abnormal. They also did a tilt table thing and it did show her bp changing from laying flat to straight up. Bottom line ....no one really knew what happened or why. Cardio said same thing- blew it off to being dehydrated (Caity drinks more fluid than anyone I know) suggested increasing salt since she eats very little junk or processed food, does not add salt to anything. And that she was not active (Caity was and still is competetive gymnast) Other docs said it some times just happens esp w/girls as they are coming into puberty. She had another episode in HS but felt signs and layed down before fainting, nurse gave her sports drink. She was very tired rest of the day. Again, no one could figure out what was going on. Hasn't happened since. 

SOOO frustrating, each doc looks at it from their specialty point of view. My thoughts and prayers are with you all. It really bothers me when adults (aka docs) do not take children seriously, I know docs questioned a lot of what Caity was telling them. I know it really pissed her off..children like her and Olivia, really know themselves and how they are feeling. May it would help Olivia to talk to someone about the frustration and all. I can't imagine what it must be like...knowing something is not right and being told its all in your head...thats just wrong.

Hugs and prayers. Hang in there dear ones and keep fighting and looking until you get the answer! May you find strength in God and each other.

Karen - it's unbelievable that there is still some uncertaintly in Olivia's diagnosis and that those dang doctors are dashing her hope and making her feel that it is in her head.  I'd like to whack that doctor upside the head.  Just start treating her if the treatment is the same .. and as part of the followup do more tests or whatever it is that they need to do to come to a conclusive diagnosis QUICKLY.  This has drug on for far too long.   

Please give Olivia a hug from me and tell her that she has sooo many people still praying for her and that she will get better ...   

Love and Hugs, 

Doreen 

Karen - You and Olivia are an inspriration to all of us! Cyber hugs to you all! Take care. - Jean

Morning prayers streaming your way.

Hope that you have a great, restful weekend together.

So what is life without drama.....boring?  I would like to be bored for just one day.  But until then, here is today's drama story:

So, I got my Pomeranian, Camille, from what I thought was a reputable breeder through who I thought was in business together with the breeder.  And I shared here the story of how the lady, Joy, called her sister on the phone to pray with me because I was getting a migraine.  And I shared how when we left her home, she asked to pray with me and Olivia.  And how she had a nice home, very nice husband and teenage son.........

Well, the first week I had Camille, I called a couple of times and left messages regarding the registration papers, but my phone calls went unreturned.  Finally, this past Sunday night, I was able to get in touch with her.  She said the papers had just come in, and she would be mailing them out the next day. 

Then I said to her "I know you told me when I got Camille, but I forgot, can you remind me how much the parents weighed?"  And folks, at that very moment, I stepped into the "twilight zone".....Joy said "I have no idea how much they weighed."  I said that she had told me that Friday and that Olivia thought she had said 6 lbs each.  She said "I wouldn't have told you anything because I have not seen the parents"..............What?  She TOLD me that her girlfriend had the parents and they were in business together. 

The next thing I know, I hear a man's voice on the phone!  She didn't say a word, just handed the phone to her husband!  He said "Can I help you?"  I told him what I had asked Joy, and his response was "if you aren't happy with the puppy then bring her back."  WHAT???  I only wanted to know how much the parents weighed!!!!  I love Camille, she is awesome, healthy, smart, just perfect!  So I told him this and said all I wanted to know was the weight of the parents.

He then informs me that they buy puppies "wholesale" so they never see the parents.  OMGosh!  Are you kidding me?  That is NOT what I was told that Friday sitting in her living room.

I said "Wholesale?  Oh please don't tell me she is from a puppy mill..."  He said again "if you aren't happy with the puppy then bring her back."  But I am happy with the puppy, but now I want to know who the breeder is.  He responds with "you're making accusations about puppy mills, what about chickens in chicken houses."   I said "What?  I didn't buy a pet chicken, I bought a puppy!"  Then I said I wanted to talk to the breeder for sure now, because I want to know if there are any congenital defects.  OMGosh again.......He then says to me (I am NOT making this up either) "What about children born with defects, you don't give them back."

Speechless and confused is the most accurate way to describe the look on my face.  I said to him "are you kidding me?  How on earth can you attempt to connect the two when we are talking about a puppy?" 

So the conversation went on another minute or two wherein he tells me that he only buys from a "reputable" breeder who has fine animals and is registered with the dept. of agriculture, blah, blah, blah.  So I told him the breeder should be GLAD to have an opportunity to brag about his dogs and be happy to talk to someone who has adopted one. 

He told me his name was Gary and he lived in Savannah, but he wouldn't give me any more info.......

Fast forward to Wednesday, I do actually get the registration papers in the mail (total shock) and it has the breeder name, address and phone number on the dumb papers!!!!  And he isn't "Gary from Savannah", he is Todd from Vidalia!  His addy is a P.O. box not a street.....I've tried calling the phone number but all I get is an answering machine.  I tried the reverse look-up using the phone number, but it comes back "unlisted".

I just KNOW this is a puppy mill and it is making me sick to my stomach that this is going on.  But I am also sooooo thankful that Camille is not still there, and that she is healthy.  I took her back to the vet on Monday and he checked her out again, and again believes she is very healthy.  He doesn't have a crystal ball of course, but everything about her is solid and looks good, so I am lucky in that respect.

My vet did tell me that people running puppy mills sell their pups to others who will sell them because they don't want a potential buyer seeing the conditions of the kennels.  Oh great...

My main focus now is on trying to get this breeder investigated.

Oh, and to top it off, I found out that Joy sells these puppies at the Pendergrass flea market!  My neighbors across the street are wanting a pom now and she was telling me about seeing some at this flea market.  Then she started giving me details about the lady selling them.......boy did the story sound familiar.....I asked her if her name was "Joy" and she said "Yes! Joy Wise"  OMGosh, that is the lady who I bought Camille from!!!! 

The most disheartening thing is Joy professes Christ and is very convincing that she is a true Christian........I pray for Christ to convict her heart to do the right thing, however, I believe that she will go for the money instead.

Karen. hugs.

My two cents: let someone else take on this situation that you've stumbled upon. You've got enough on your plate at the moment. But if it's a diversion from other things -- you'll know how big your heart it & what it can handle.

Journey has summed it up well. You've given this cutie a guarenteed level of care & love.

xx00xx00xx00xx00xx

I have been thinking of those words all day today! I think it is so important for all of us to "slow down and be still" The world is so crazy

Well Karen, I'm glad that you weren't horribly offended by us-ol-grannies being overly concerned for you, your well-being and your fortitude.

I like the bumper sticker that says:

"I've resigned as general contractor of the universe."

On one of the threads here I once found a suggestion for meditation:

Be still and know that I am God.

Be still and know that I am.

Be still and know that.

Be still and know.

Be still and.

Be still.

Be.

It's given me much comfort.

(And slowed me down, at the same time. LOL)

faith- I have often used that when meditating, well just sitting quiet really.

Karen- Camille is adorable! so glad she found her way to you, I suppose in some way you both needed each other.  Hope everyone is doing well in your house; my prayers are with you.

Slowing down is not as easy as it seems, in some ways it is a bit scarey since thoughts can catch up with us..... hugs and prayers to all.

wish I could take credit but wasn't me although I use it a lot. Are you home from all your trips?

So Camille's past gets more confusing.  The guy listed as the breeder on her papers actually called me today!  I was soooo shocked!  So he tells me that he gets the puppies from ANOTHER breeder there in Vidalia!  But what I think he meant was he bred his girl with another breeder's boy.  I get this idea from the names of the parents on the registration parents.

The good news is (provided he was being truthful) Camille is from the first litter of her mother, and he said he breeds every other heat.  The father is from "Wee Heart Kennels".  The lady that own Wee Hearts has showing and breeding for over 20 years and owns many champions.  He gave me her website address and contact info.  So I have left her a message and sent an email so hopefully she will respond. 

None of this matters where Camille is concerned anymore, I am just determined to get to the bottom of it if possible.  I am just baffled as to why the "seller" or "puppy broker" or whatever she is, didn't just tell me in the beginning that she buys from a breeder in Vidalia, and openly offer his contact info.  All the lies and secrecy make it look like she is up to no good.  She still may be, but it is looking a little better that hopefully no puppy mill in Camille's case. 

Again, I am totally in love with Camille, so it doesn't matter with regards to her future.  I am only worried about her parents.  So hopefully this guy was truthful and her parents are in excellent care.

And she is just so gosh darn precious!

Just in case anyone is curious, the web address is http://www.weeheartpoms.com/