RE: personal experience w/ vest

[Guest guest]

We got Patti's to prevent lung problems. Another reason I got it (and why I

think the insurance company approved it) is because due to some of the problems

my older children have I need to home school them. It has helped remove that

huge chunk of the day where I sit and hold a percussor.

I do believe that it has helped Patti cough up more with these last two colds.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

,

My daughter Kate has been using the vest since she was about two years

old. The vest was recommended by her respiratory therapist because she

had previously cultured pseudomonas. Even though she wasn't very sick,

her culture put her at a higher risk for hospitalization, etc. I

believe the thinking is that using the vest increases compliance with

CPT orders. The child gets lung clearance therapy more consistently and

this prevents severe illness. So, the prevention rationale was used

with our insurance company, and they paid for it.

Kate tolerates her vest very well, and it seems effective. However, I

get better results (more coughing) with manual CPT. I think the

different positions facilitate the drainage of mucus. So, we alternate

treatments. Kate gets manual CPT in the mornings and uses the vest in

the afternoon. This works really well for us.

Take care,

Jane Lindrum

Mom of Kate, 4 yowcf

I am going to ask our CF doc on Wed if my 28 month old son can get

the vest. I would like to hear some stories about how it worked for

you. Do you think that the vest works better than manual

percussion? We use a Flimm Fighter percussor now and I can't hold it

due to severe wrist problems. Does your child seem to get more mucus

up with the vest? And did anyone get the vest in order to PREVENT

lung problems? My son doesn't have any problems now but i want to

prevent them.

thanks for your input!

mom to Ashton wcf

[Guest guest]

Jenifer,

Our experience may not be too helpful, because a was diagnosed

when she was almost 9. But, when we embarked on this ship called CF,

ns words, our first doctor was a sorry you know what. He did

not bother to tell us about TOBI, Pulmozyme and he went on to tell us

that the vest, well, we could not afford!! We got a 30 minutes drill

on chest pt and he sent us home, with an appointment to see a

again in 30 days later. Never mind that a had a collapsed lung

and was really sick, brrr, makes me mad just to think about that son

of a gun. I tell you there is not too many people that I dislike, he

is one of them, maybe the only one. But, for a Chest pt was a

nightmare, she hated it, she hated me, it was horrible, we tried for

about two weeks, I think. Then you know how Angels are all over the

place, even in places where you least expected it? My sister in law,

who is a true socialite, went to a party with her husband, the theme

was the beach. She was sitting with her neighbor who is a doctor, he

is from Egypt, and another doctor from Armenia stopped on their table

to talk to this doc from Egypt, and sat next to my sister in law,

this is the week that we are still dealing with a's diagnosis,

and my sister in law is playing with the sand, that was decorating

the table, the doc from Armenia tells my sister in law, to make

conversation, " do you know that to find out if a patient has cf they

test the salinity of their sweat? " My sister in law almost dropped

to the floor, so she proceeds to tell this angel in disguise about

our little girl. This doc told my sister in law the only doctor you

need to see is Dr. Hanissian, he will take care of your niece better

than anybody else! Boy, was he right, this doc made the appointment

for us and on our first visit we knew more about cf in 2 hrs than

that son of a gun, who is from the CF foundation, and kept us there

for a whole day, only filling out papers to count us for his numbers

to the foundation, that was his only concern. Well, sorry it took so

long but for a the vest was a hit from the get go, she can

control it and I do not have to be there with her. Now, I have read

several papers that campared the vest with chest pt and if chest pts

are done right and every day when supposed to , it is as effective as

the vest. That was my problem, I second guessed how good I was doing

it and then a would start crying before, during and after the

therapy, it was killing me.

I am so sorry I took so long, but just thinking about that guy who

does not deserve to be called a doctor, makes me irk.

Love to you and Ashton,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> I am going to ask our CF doc on Wed if my 28 month old son can get

> the vest. I would like to hear some stories about how it worked

for

> you. Do you think that the vest works better than manual

> percussion? We use a Flimm Fighter percussor now and I can't hold

it

> due to severe wrist problems. Does your child seem to get more

mucus

> up with the vest? And did anyone get the vest in order to PREVENT

> lung problems? My son doesn't have any problems now but i want to

> prevent them.

>

> thanks for your input!

> mom to Ashton wcf

[Guest guest]

,

has had the vest for close to a year now and is almost 28 months, 31

lbs 36 inches tall , chest circumference needed to be 20 inches to be able

to get it. fought it at first now he loves it we just put in a video

, elmo, kipper, wiggles etc we do it 20 min 2 x a day. you will love the

freedom, go for it! our insurance co payed for it with no trouble also. i

check your website to check on Ashton every month, he looks so good.

does not have lung issues at this time either so the vest is just

preventative. good luck and go for it!

Amy mom to Almost 28 months with cf

>

>Reply-To: cfparents

>To: cfparents

>Subject: personal experience w/ vest

>Date: Mon, 11 Aug 2003 14:44:20 -0000

>

>I am going to ask our CF doc on Wed if my 28 month old son can get

>the vest. I would like to hear some stories about how it worked for

>you. Do you think that the vest works better than manual

>percussion? We use a Flimm Fighter percussor now and I can't hold it

>due to severe wrist problems. Does your child seem to get more mucus

>up with the vest? And did anyone get the vest in order to PREVENT

>lung problems? My son doesn't have any problems now but i want to

>prevent them.

>

>thanks for your input!

> mom to Ashton 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]

Amy & ,

My daughter has had the vest for about 9 years now. It has been a

wonderful tool. She is able to do almost anything while she is doing her

treatment. She does it for 30minutes twice a day. She can eat with it on,

read with it on, some writing on the first 10 minutes setting. It has given

her and our family some real freedom. We have even taken it on vacation

with us and she flew once to her grandmothers and took it on the plane with

her. It is a great thing for preventative.

Steph has not had much lunch involvement. Her problems are more asthma

related that CF related.

Tina - mother of Steph, 17w/cf

personal experience w/ vest

>Date: Mon, 11 Aug 2003 14:44:20 -0000

>

>I am going to ask our CF doc on Wed if my 28 month old son can get

>the vest. I would like to hear some stories about how it worked for

>you. Do you think that the vest works better than manual

>percussion? We use a Flimm Fighter percussor now and I can't hold it

>due to severe wrist problems. Does your child seem to get more mucus

>up with the vest? And did anyone get the vest in order to PREVENT

>lung problems? My son doesn't have any problems now but i want to

>prevent them.

>

>thanks for your input!

> mom to Ashton 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.

>

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

>

>

>