dear dear

[Guest guest]

Dear

First let me say, that I know it is hard to hear anything because your heart is

thumping so loudly.

Next... try to hear my words...   YOU are your childs own best advocate.  You

know when that mean bully or that nasty mom said some thing to you about your

child, and you could and maybe did bite their head off?... Well you need to

RECLAIM that attitude... it is very important to your family right now. 

Mind you, some people don't have it... if you are not that kind... you find

someone who does.  and ask them to help be an ADVOCATE FOR YOUR CHILD. a sister

or brother, mother, father, friend, husband. Someone STRONG of Character.

  this is an Occupation! believe it or not.

 

You need to NOT think of your doctor, just your child.  ( I met so many who just

wanted a whack at him.. Poo! )

Identify what YOUR CHILD  needs, not what anybody tells you.  YOU know better

than anyone on this planet what he needs.

You need to put your self in a position to know MORE than your primary doctor.  

I guarantee you will..

..It won't take long till this is done,

 

You need to have a relationship with the Pediatrician and the Medical Billing

Person in that office, that you can tell him where you need to go. They should

just do it..

This could require you to move to a network that is TINY SO THEY HAVE TO REFER

OUT FOR EVERYTHING!!!!!

At the first doctor I went to, when Cameron was having the first signs of not

swallowing, the Pediatrician told us much the same thing,  We needed to go to

whom ever he refered, It would be whom HE felt we needed, IT would NOT be out of

his system... AT ALL.  We were in the University of CA DAVIS system who is

premier for some things.. but not for children and gastro things.

 You know what... here is what I thought.

this is the USA and I have a right to chose the BEST MEDICAL CARE AVAILABLE IN

THE WHOLE WORLD FOR MY KID AND NO ONE IS GONNA TELL ME DIFFERENT... that was my

opinion.  and so I shopped for a new pediatrician.

I dont know where you are located or how many different achalasia specialists

you have spoken too, but... you need to interview them, interview the folks who

have seen them, and those who have had CHILDREN with this situation.  Use the

achalasia site...

YOUR SITUATION IS SOOOO RARE, THAT YOU HAVE THE OPPORTUNITY TO CALL THE SHOTS...

you need to, you have it available to you, the opportunity to get the best

possible care for your chiild..

All you have to do is insist on it.

You as a mom have a lot of research and reading to do, to.. Spend some time on

Google Scholar, and then on the Achalasia site.  In the member search bar in the

middle of the page, type in some specific words you need info for.. like HMO or

gastro.. or a doctors name.

 

Below I have copied another situation that we faced and a letter i sent to

another woman faced with HMO problems.

 

I want to encourge you that

1.YOU CAN DO THIS. 

2. FIND A PEDIATRICIAN YOU CAN WORK WITH

3. GET OUT OF THE NETWORK YOU ARE IN, ESPECIALLY IF YOU ARE IN A UNIVERSITY

NETWORK. they will NEVER admit that Achalasia is NOT their speciality.

4. FIND THE SPECIALIST YOU can WORK with. OR HAS THE SKILLS YOU NEED FOR YOUR

BABY...( I didnt say " like " the doctor)

5.DO YOUR RESEARCH

6. Join WWW.REFLUX.ORG at pager.net. 

7. REALIZE THE NEED FOR THE POSSIBILITY OF A SUPER PEDIATRIC SPECIALIST AS YOUR

CHILD HAS THE OPTION FOR A LOT OF GROWTH, AND LONGEVITY AHEAD.  and Potential

problems ...

8. By the way, your Achalasia Specialist will have a research or personal

assistant who will do the neccessary " fighting " with the med insurance as

needed.

Above all Be Prayerful and Know this experience will truly make you into a

person of great character for your self and your family... so Greet this

challenge like it was an adventure.. You wouldn't go to Disneyland and not know

ahead of time what is there to see would ya??  : ))

Know in your heart that the only person that really matters in this is your

child, and your sweet baby is entitled and deserving of the best medical

knowledge and experience that money can buy... EVEN IF YOUR DON'T HAVE ANY!! 

I AM ONLY TOO HAPPY TO HELP YOU IF YOU SO DESIRE.

See the message from 2 years ago below.

Carolyn

mom of Cameron ...

in No. CA

 

Kathleen Message #38239 of 52995

Kathleen, you have all latitude you want, you just have to fight for it from an

educated point of view.  I am surprised  you HMO didn't want a dilation done

first.  That is what ours said. They rejected our request for even the lap, but

fortunately, our Surgeon of " CHOICE " 's assistant did all the educated medical

fighting for us, with documentation.  Perhaps it is in your best interest to ask

them what the decision was based on.   We found that our HMO decision was based

on their medical resource dictionary that listed the information and

recommendations regarding treatment of Achalasia from medical resource papers

from 1999.

 

You are entitled to a second and a third opinion. I would use this. Your

insurance company does not have your best interest in mind they have their

Dollar Bills in mind.

 

So be your own best advocate or perhaps you have someone who can help you, Be

the tough Questioneer...

Given that Cameron's surgery was Well over $125,000 for his open surgery, the

Lap is a cheaper choice, and the Balloon Dilation is even cheaper. 

 

Interview the network person.(surgeon) .. get the questionnaire from the

database and fire away...

 

I wish you the best..

Carolyn mom of Cameron ... in the Foothills of the Sierra expecting a dash of

Snow....

" Kathleen R. " <eringobrough2@...> wrote:

Thank you all for the input. Unfortunately, I found out yesterday

that my insurance company has rejected my request to have a

laproscopic myotomy done at the university. They have a thoracic

surgeon in network that does the myotomy as an 'open' thoracic surgery

(not VATS) and said I should go to him. He has an excellent

reputation as a surgeon, but I do think a laprosoptic approach might

be safer for me especially since I'm in what is considered the early

stages of A. And the surgeons at the University also have very good

reputations.

I'm trying to decided what to do next. Do I go with the thoracic

surgeon? Do I appeal the HMO's decision? Do I attempt to switch

insurance companies to one that would cover the laprosopic myotomy

done at the university (hoping that I can switch with a 'preexisting

condition')? Looks like I'll be doing some more research.

 

 

 

 

From: ANGELA BAKER <kotacj@...>

Subject: Re: !!

achalasia

Date: Friday, November 21, 2008, 3:41 PM

carolyn- ok breath. dakota is 100% tube fed. he cannot eat or drink anything. he

has a nasododenal tube. this tube was inserted this summer after a 50lb weight

loss.first gi fired, second gi doc excellent, caring, listened to us, but

couldn't figure what was wrong and refered us to 3rd gi doc. 3rd gi doc figured

it out but now refuses to write us a letter of medical neccesity to see doctor

rice. 3rd doc wants us to see dr rodgers ,surgeon, who has only done a total of

7 hellers in his 30 year career. our insurance company has already approved this

doc. the referal to this surgeon was done without our knowledge. I totally agree

with you when you say young arrogant pup.the reason he gave us for refering us

to this surgeon is because , " I have to refer to someone in our system or it

would seem like I don't have confidence in our surgeons. " read, " I want to sit

at the big boys table. " we did meet with this surgeon and that is where we

learned he'd only done

seven surgeries, he knew nothing of eosinophilic esophagitis or gastroparesis

and the impact surgey could have on these conditions. after several discussions

between my husband and myself we told the surgeon we were not going with him

only to find out the surgery had already been approved. we do have an awesome

primary care doc who is writing a letter of medical neccesity and today dakota's

2nd gi doc wrote us a letter. we do not have a surgical date set because I was

waiting to get insurance approval for cc. if I'm hearing you right, the primary

care docs referal carries the most weight with the insurance company. how do I

undo the damage already done by dr barrette barnes with regard to this surgical

referal? or do I even need to. will the insurance company take issue with me

because of this? or will they let it go because I do have a primary care doc and

as of today a gi doc who are willing to support us? thanks for taking time to

help me breath.

when I read you post I felt some anxiey lift...angela

hmo nightmare

achalasia@grou ps.com<mailto:achalasia% 40groups. com>

Date: Thursday, November 20, 2008, 1:31 PM

dakota's gi doc is refusing to write us a letter of medical necessity

which will help us in our quest to have dr rice operate.

dr barrette barnes of vua want us to let dr bradely rodgers operate on dakota.

he says because he works with dr rodgers he is obligated to refer to my son to

dr rodgers because he, dr barnes, " depends on his relationship " with the doctors

at uva.

since when does a doctor not consider what the patient wants.

i am cring so hard right now i can't even see how type.

please please help me. should i get a lawyer?

i only wants dr rice,

i don't doubt dr rodgers is a good surgeon but he has only done 7 of

these procedures and one of the seven had to go back.

he has not kept tract of his previous patients and refuses to give us any phones

numbers or information regarding his patient outcomes. when asked about the fact

dakota has eosinophilic esophagitis and the impact it could have on surgery he,

dr rodgers said " he didn't know. "

when ask how dakota gastropresis will impact the surgery he said " i don't " know.

what the hell... please if anyone can advise me, please...angela