hi, new to list

June 19, 2001

Hi welcome to the list.

I am -Mom to 3 1 w/ CF?

I live in NC.

June 19, 2001

Hi ,

nice to hear from you. I m in London UK, where about are you? What ages are

your children and are they boys or girls?

Re: hi, new to list

> Hi welcome to the list.

> I am -Mom to 3 1 w/ CF?

> I live in NC.

>

June 19, 2001

YOU HAVE THAT RIGHT !!!

LOVE, GRDMB

Re: hi, new to list

A good trick with the vest (until the insurance

company approves it) is to

just run it for the required amount each day. I

know this sounds bad, but

the reality is, there will come a time when your

child does use the vest as

it is prescribed. Until that tim, there is no

need to take it out of the

home -- only to try and get it back at a later

date. So just run it for the

1 hour per day to shut up the damn insurance

company people. Best of luck.

PLEASE do not post religious emails to the list.

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

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.

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

June 19, 2001

YOU can apply for the compassion program.It goes

thru your clinic.Ask them for the papers and then

you'll get it.Pathogenenis has one for this......

It has to be done for each time you want a months

supply. TOBI is taken every other month soooooooo

, that's 6 times a year. BUT , it is for a $2000

month med. bets but this should be done by =. the

Social worker at clinic should help you with this.

TELL The DOC.............

LOVE & HUGS, grandmomBEV

Re: hi, new to list

thanks brenda for the message. angela is how old?

clint is 10. very outgoing

and wants vest to get everything done at once. our

day is like tobi, sinus

wash, physical therpy on lungs, eat, inhalers for

astma, nose spray,

dressed, teeth, and then he can do what he wants.

if we had a vest some of

those things could be done at the same time and he

would be done faster. i

am not complaining by no means but want if we

aren't doing pts. correctly or

long enough. cause he wants you to hurry! he wants

to be normal and done

before we are done.

i hate this for him. doc says he will write the

script but we don't have

insurance so we won't get it. sorr;y for the

rammbbbblliiinnnggg.

thanks tammie

Re: hi, new to list

> Hi Tammie, Nice to hear from you. Clint sounds

like with the sinus

> stuff. But she won't do nasal washes, we have

tried various methods and

she

> feels like she is drowning any way we do it..

> About the Vest, you just have to ask his CF doc

if he thinks a Vest would

be

> good for Clint. Usually you just need a Rx for

it, the Vest company takes

> care of getting it paid for, they go to your

insurance co and negotiate a

> deal. I just heard from them yesterday, they

said wasn't using it

> enough. She doesn't. she only does it once a

day and some days she skips

> it. I don't want them to take it away so I

talked her into 20 minutes

once

> a day. The cf doctor has said this is OK but

they need them to send new

> orders for it because the order right now says

she is supposed to use it

for

> 30 minutes twice a day. I am sure they will

figure something out and I

know

> the docs don't want it removed. So all you new

vest users, if your child

> isn't doing as much as the doc ordered either

leave it on when they aren't

> using it or negotiate a new order for it to be

done less.

>

> Anyway, sorry for the rambling message,

> love,

> M

>

> PLEASE do not post religious emails to the list.

>

> -------------------------------------------

>

> 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.

>

> ------------------------------------------------

--

>

June 19, 2001

hi, just wondering where everyone is from? thanks for the email. i have a son

with cf. his weight gain is poor, but he is doing well .

tneal

June 20, 2001

HI BRENDA M. MY NAME IS TAMMIE AND I HAVE A HUSBAND NAMED EDDIE. WE LIVE IN

GLASGOW, KY. ONE SON NAMED CLINTON. HE WAS DIA. ON MARCH 3, MY MOTHERS

B-DAY, 1990. CLINT WAS 6 MONTHS OLD. HE WAS SICK WITH A COLD, WENT INTO PNE.

AND THEN BROC., LOST WEIGHT BY PDS. DAILY. WE WERE SENT 2 HOURS AWAY FROM

HOME TO CHILDRENS HOSPITAL. THEY DID THE TEST AND ON MONDAY, WE WERE SENT ON

FRIDAY. POSITIVE!

CLINT DOES VERY WELL. HE HAS HAD THE SINUS SURGERY THIS YEAR. HE HAS MORE

TROUBLE WITH THEM THEN ANYTHING. HE DOES THE BREATHING TREATEMENTS 2 DAY.

PLUM. ONCE DAY. SINUS WASH 2 DAY. IF SICK MORE. HAS BEEN ON TOBI FOR 28

DAYS. OFF NOW. WE COUGHED LAST NIGHT!!

THANKS FOR THE INTEREST IN CLINT. NEED HELP GETTING HIM A VEST. WE DON'T

HAVE ONE. MOST PEOPLE IN AREA HAVE ONE. THE ONES THAT HAVE BABIES ARE

GETTING ONE. ??????

TALK SOON.

TAMMIE

Re: hi, new to list

> Hi Etneal (is that your real name?)

> I'm and I have 2 kids, Nick age 19 nocf and 17 wcf. We live

> in Southern California, to be exact we live in the city of Orange. We

> pretty much like it here except for when it gets really hot and smoggy,

then

> we spend a lot of time indoors with the air conditioning. My daughter is

> doing pretty well, she is scheduled for sinus surgery and a bronch, in

late

> July. Sshe has good lungs and good nutrician, just these pesky sinuses

keep

> giving her trouble. Before the surgery she is going to Europe with a

school

> group. The teacher just called today saying she needs a doctors note

saying

> is healthy enough to go and everything. I think I will call the

> pediatrician for that one, if I call the cf center I have my doubts as to

> whether or not it would be done before July 2 (when they leave).

>

> Anyway, thats about it for now, welcome to the list and write more and

tell

> us about your family. How did your son come to be diagnosed?

> Love

>

> PS there are at least 2 other 's on this list, one has twins, one

has

> triplets, and then there is me, with 2 kids born at different times. They

> are very close in age, 22 months, so they were almost like having twins

> there for a while.

>

> PLEASE do not post religious emails to the list.

>

> -------------------------------------------

>

> 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.

>

> --------------------------------------------------

>

June 20, 2001

HI, CHRISTY. GLAD TO HEAR FROM YOU. WE ARE FROM KY. HOW IS YOUR FAMILY?

TAMMIE

Re: hi, new to list

> I'm in Bentonville (Northwest) Arkansas - anyone else from AR?

>

> > hi, just wondering where everyone is from? thanks for the email. i

> have a son with cf. his weight gain is poor, but he is doing well .

> > tneal

> >

June 21, 2001

Hi Tammie,

is 17. You don't have insurance at all? Or does it just not cover

medical equipment? Either way its too bad. I couldn't get along with out

insurance. We always get crappy HMO's but they do pay for everything,

sometimes it is a hassle and sometimes not so bad. My husband said we are

getting new insurance next minth. I hate it when the insurance changes. And

we are in the middle of getting things approved for her sinus surgery.

Anyway, I have 300+ messages so guess I will carry on. It's the last day of

school for . I think she got everything worked out so she will pass.

She has to go one day next week and catch up on her anatomy exams. And she

has some German to do too.

Talk to you guys later,

love,

mom of Nick age 19 nocf

and age 17 wcf

June 21, 2001

BRENDA, I see your up late as well. it is 3:26am here. i just couldn't sleep

for whatever reason. I am glad to hear that is getting thru all this

stuff.

I know she will do the last 2 things great. I know the excitement is

building for the trip. wish she was still going to do the pulmo tho, BUT,

that's at least one thing she wont have to worry about.....Take care. get

some rest yourself. i am not sure what time it is where you are . but it

isn't stay up time ..:)

LOVE & HUGS, GrandmomBEV