Re: Standard Care for CF Infant

[Guest guest]

Contact the CF Center you want to use and tell them your problems. They are

used to dealing with this and know what and how to say things. My CF Center

is great at this - I have 2 vests to prove it.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

The newly diagnosed are entitled to the care of a children's part of a

cystic fibrosis clinic. Period. Those are the Cystic Fibrosis Foundation

standards. No harm in going for the best you can get!

Good Luck,

n Rojas, wcf, whose youngest, wcf was treated in such manner!

[Guest guest]

No,

Please find aCF clinic that is closest to you . Where do you live??

On the CFF web site, they have a link to all CFF care centers.. If you

want to tell us where you live , perhaps someone even goes to a clinic

near you . Most insurance companies will cover that .and you can appeal

if they don't .It will save them $$$ big time in the long run. Best

wishes,

LOVE & HUGS, grandmomBEv

Standard Care for CF Infant

My son was recently diagnosed with CF and we are battling with the

insurance company about his care. The pediatric pulmonologist we

saw initially said Zach needed to be seen regularly by a pediatric

pulmonogist, nutritionist, and a cpt specialist. Our insurance

company wants to send Zach to the local pulmonologist who does not

specialize in pediatrics. Is this normally how things work? What are

the necessary specialists Zach should have?

We are willing to fight the insurance company for the best care for

Zach but we are not sure what is the correct care for him.

If anyone could point me in the right direction I would really

appreciate it. Thanks!!

Sara

Mom to Zach 1 wcf

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

------------------------------------

[Guest guest]

Sara,

He should be seen by a Cystic Fibrosis Clinic..which would include all of the

specialists you mentioned. Have you spoken to your pediatrician....maybe you

need referrals...sorry I wasnt much help.

Best to you...keep us posted

Mom to KM 8 wocf, and Paige 3 wcf, and author of " Juggling Cystic Fibrosis.

A Health Journal "

Standard Care for CF Infant

My son was recently diagnosed with CF and we are battling with the

insurance company about his care. The pediatric pulmonologist we

saw initially said Zach needed to be seen regularly by a pediatric

pulmonogist, nutritionist, and a cpt specialist. Our insurance

company wants to send Zach to the local pulmonologist who does not

specialize in pediatrics. Is this normally how things work?

What are the necessary specialists Zach should have?

We are willing to fight the insurance company for the best care for

Zach but we are not sure what is the correct care for him.

If anyone could point me in the right direction I would really

appreciate it. Thanks!!

Sara

Mom to Zach 1 wcf

[Guest guest]

Hello Sara!

This is my first day back with CF Parents and Conncol. I have taken a

break, which was very much needed, but I missed so much!

My son with CF is 6, and we just came back from a clinic annual visit

at Childrens Hospital in Denver. I thought I would share with you

some of the groups we met with so that you can compare it to your

center or doctors if you do not have a CF center.

We saw a Nutritionist, a Nurse, a Doctor, a Social Worker, a

Respiratory Specialist, got blood drawn for several tests (plus a few

studies), got x-rays (this time we actually got a CT scan for free

because it was covered under a study), and throat cultures.

This, I believe is standard care for the annual. If you need help

finding your center, let me know. I have a book that lists them all.

P.S. 's day was very good, with a good report on his lungs!

Best of luck,

Lenora

>My son was recently diagnosed with CF and we are battling with the

>insurance company about his care. The pediatric pulmonologist we

>saw initially said Zach needed to be seen regularly by a pediatric

>pulmonogist, nutritionist, and a cpt specialist. Our insurance

>company wants to send Zach to the local pulmonologist who does not

>specialize in pediatrics. Is this normally how things work?

>What are the necessary specialists Zach should have?

>We are willing to fight the insurance company for the best care for

>Zach but we are not sure what is the correct care for him.

>If anyone could point me in the right direction I would really

>appreciate it. Thanks!!

>

>Sara

>Mom to Zach 1 wcf

>

>

[Guest guest]

Hey Sara,

Definitely check into a CF clinic. I read other responses and they

are most definitely right on (like always!)! When my son was

diagnosed we ended up with roughly $8-$10,000 in medical co-pays

(surgery right down to medical supplies) and our clinics social

worker helped us tremedously!! We ended up with only about $1,000 to

pay. Much better than $10,000!

Good luck to you!!

Michele B

mom to Mikailh 5 1/2 w/Asthma & Matt 10 mos. w/CF

-- In cfparents , " dwson2 " <dwson2@y...> wrote:

> My son was recently diagnosed with CF and we are battling with the

> insurance company about his care. The pediatric pulmonologist we

> saw initially said Zach needed to be seen regularly by a pediatric

> pulmonogist, nutritionist, and a cpt specialist. Our insurance

> company wants to send Zach to the local pulmonologist who does not

> specialize in pediatrics. Is this normally how things work?

> What are the necessary specialists Zach should have?

> We are willing to fight the insurance company for the best care for

> Zach but we are not sure what is the correct care for him.

> If anyone could point me in the right direction I would really

> appreciate it. Thanks!!

>

> Sara

> Mom to Zach 1 wcf

[Guest guest]

My personal feeling is to fight for the pediatric specialists--as

long as they are very familiar with CF. A pulmonologist locally is a

good resource to have, though, also. Cody has more GI problems, so

we see the local pediatric GI doc, and we also travel 3-1/2 hours to

the Twin Cities to see his CF docs at the Univ. of Minn. At first,

insurance didn't want to do both, but all I did was have the CF docs

in the cities write a letter to them stressing the importance of

having a team of CF specialists see him regularly (now down to every

6 months we go there, unless he's sick), and they approved it just

wham-bam!

Good luck!!!!

S.

> My son was recently diagnosed with CF and we are battling with the

> insurance company about his care. The pediatric pulmonologist we

> saw initially said Zach needed to be seen regularly by a pediatric

> pulmonogist, nutritionist, and a cpt specialist. Our insurance

> company wants to send Zach to the local pulmonologist who does not

> specialize in pediatrics. Is this normally how things work?

> What are the necessary specialists Zach should have?

> We are willing to fight the insurance company for the best care for

> Zach but we are not sure what is the correct care for him.

> If anyone could point me in the right direction I would really

> appreciate it. Thanks!!

>

> Sara

> Mom to Zach 1 wcf

[Guest guest]

>

>

> Date: 2003/03/14 Fri AM 09:23:42 EST

> To: cfparents

> Subject: Standard Care for CF Infant

>

> I feel lucky that I don't have to deal with the real insurance companies right

now. My Zack is on Medipass and form of medicaid and they cover everything

without a hassle. We were told at the begining of Zacks diagnosis that he need

specialized care to get the best care he could and that means seeing a

pulmonologist at the CF center, a nutritionist, CPT specialist and a number of

others at the Center. I suppose we are one of the lucky one who doesn't have to

worry about copays and the like.

I have heard that a lot of you may be eligiable for help through medicaid do to

the fact that our children have life-long, life-threatening disease ( I am not

sure if I put that right or not but ya'll know what I mean). It took me a long

time to accept the fact that we needed help from the goverment but now I realize

that with out that little bit of help my son would not be getting the care he

needs. I would strongly advise that ya'll look into the possiblity of getting

supplemental insurance either from Medicaid or some other source to off-set the

copays.

Christal

mom of Tristan 6ncf, Zack 2wcf, Ki'a 4mthsncf

[Guest guest]

In a message dated 3/14/2003 8:40:41 AM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

> - I have 2 vests to prove it.

YOU HAVE TWO VEST?? NOW HOW DID YOU DO THAT? I HAVE ASKED ABOUT TWO VEST AND

THEY TELL ME THAT THE COMPANY WON'T USUALLY GIVE OUT MORE THEN ONE PER

FAMILY. DEB A

[Guest guest]

It all depends on the letters and requests written. I think my CF Center is

great at writing and getting things.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

In a message dated 3/23/2003 1:39:44 PM Central Standard Time,

pswyd@... writes:

> C

I didn't think it was possible to get two vest for two kids!! When I talked

to Randy about it he said they only allow one vest per family. Deb A

[Guest guest]

In a message dated 3/23/2003 2:07:14 PM Central Standard Time,

rgarcia@... writes:

> Randy

I think I am going to give it a try because having two kids that are 5 years

apart from each other in age they are both going in different directions.

Next year my oldest will be going to a camp for 3 days and I was wondering

how I was going to get her treatments done. If it was only 1 day I wouldn't

have wonder about it but for 3 days I don't want her to go that long without

is. I guess it can't hurt to try!! Deb A

[Guest guest]

Hi Deb,

We have two vests as well. We didn't have any problems

getting two for our twins, Mick and Alli. The people

I worked with at Advanced Respiratory were really

nice and when I insisted I needed two, they didn't

have a problem with that at all. Perhaps it's your

insurance that is getting in the way? They may have

a history with them that makes getting two paid for

difficult. Just a guess, although Advanced Respiratory

is pretty good about working with insurance companies

and getting them to cough it up! pardon the pun LOL

C

Mommy to Mick and Alli, 3 yo twins wcf

--- gdattig5@... wrote:

> In a message dated 3/14/2003 8:40:41 AM Central

> Standard Time,

> ROSEMARY3FOR3wCF@... writes:

>

>

> > - I have 2 vests to prove it.

>

> YOU HAVE TWO VEST?? NOW HOW DID YOU DO THAT? I HAVE

> ASKED ABOUT TWO VEST AND

> THEY TELL ME THAT THE COMPANY WON'T USUALLY GIVE OUT

> MORE THEN ONE PER

> FAMILY. DEB A

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

I guess I can tell you what our experience has been. We (Advanced

Respiratory) have no problem with providing two Vest devices. The trick is

getting the insurance companies to approve it. Unless there is a CLEAR

medical need (risk of cross contamination, one sibling leaving the home,

etc.), they will not approve it. They consider it a " convenience " instead

of a medical necessity. We try to work with families to help them get a

second device and we have to have a considerable amount of documentation

from the MD to prove the need. The MDs have to be willing to provide the

needed documentation AND sign it to justify the need. Not all MDs are

willing to do that.

If you feel that you have a clear medical need for a second device, please

talk to your MDs to get a prescription. We will do what we can to make it

happen.

I hope this helps. Let me know what else I can do.

Randy

Re: Standard Care for CF Infant

Hi Deb,

We have two vests as well. We didn't have any problems

getting two for our twins, Mick and Alli. The people

I worked with at Advanced Respiratory were really

nice and when I insisted I needed two, they didn't

have a problem with that at all. Perhaps it's your

insurance that is getting in the way? They may have

a history with them that makes getting two paid for

difficult. Just a guess, although Advanced Respiratory

is pretty good about working with insurance companies

and getting them to cough it up! pardon the pun LOL

C

Mommy to Mick and Alli, 3 yo twins wcf

--- gdattig5@... wrote:

> In a message dated 3/14/2003 8:40:41 AM Central

> Standard Time,

> ROSEMARY3FOR3wCF@... writes:

>

>

> > - I have 2 vests to prove it.

>

> YOU HAVE TWO VEST?? NOW HOW DID YOU DO THAT? I HAVE

> ASKED ABOUT TWO VEST AND

> THEY TELL ME THAT THE COMPANY WON'T USUALLY GIVE OUT

> MORE THEN ONE PER

> FAMILY. DEB A

>

>

> [Non-text portions of this message have been

> removed]

>

>

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------