Re: Pulmozyme? clinic visit

[Guest guest]

has been on Pulmozyme for a long time. She seems to do ok with

it. No adverse affects.

She does hers at night. It is very expensive. Thank God for insurance.

TOBI is even more expensive than that!

Tina W. mother of 17yoa wcf

Pulmozyme? clinic visit

Hi all, We had clinic today, well it was early, has been sick and we

were able to get him in a week early, a lot has happened today, first

is in 108% of weight and height, he weighed in at 45 pounds and he is 3'

7.86 "

in height, unfortunately right before he got sick he weighed in at almost a

whopping 49 pounds, but this cough has taken a lot out of him. He is on

bactrim

for the cough, so hopefully he will start feeling better. OK his vest has

been increased to three times a day and with each of the vest sessions he

will do

albuteral,so he will do this schedule from now on : (morning-

albuteral-vest)

(afternoon-abuteral-pulmozyme- vest) and then (evening albuteral-vest). so

we

are going to be busy,thats not even including his other meds.Pulmozyme is

new

to us, So I am learning all about it, I can't believe it cost over 1400.

dollars a month. 's insurance should take care of it, I have a few

questions about how does one do treatments on the weekends or when your out

a lot? do

they have a nebulizer that can be carried in the car with all the

adaptations?

Its funny we went from doing nothing except enzymes to all of this, Hey

guess

what, did his first pfts today, his doctors actually said that it

was

great for his first time, he even got a certificate for it. I am a little

overwhelmed but that's because I haven't put it down on the schedule, I feel

better when I can track it all on paper charts. so overall is doing

great.

I was concerned about the pulmozyme, I assumed at first that He must be

going

to downhill because he was placed on it, but they reassured me that it was

preventive maintenance, so I am all for that. So what kind of experiences do

you

all have with pulmozyme?Ok I have rambled on enough, talk to you all later.

, mommy of 5 years old w/cf/adhd and 2 years old no cf

[Guest guest]

Hi ,

Wow, a lot has been going on! I'm sorry to hear about 's cough.

has been on the pulmozyme for a long time. (I think she went on it when she was

about 15-18 months- she will be five next month) It is always a big adjustment

when they add something but the pulmo is good for preventative maintenance.

My suggestion for scheduling is the pulmo is to do it when it is most

convenient. We do it in the evenings when gets her 2nd treatment. She

gets Vest with Albuterol/chromolyn 2x a day. She is also on tobi every other

month- she gets that twice a day, when she is on it, after vest. I hope you can

get it all worked out.

Pulmozyme? clinic visit

Hi all, We had clinic today, well it was early, has been sick and we

were able to get him in a week early, a lot has happened today, first

is in 108% of weight and height, he weighed in at 45 pounds and he is 3' 7.86 "

in height, unfortunately right before he got sick he weighed in at almost a

whopping 49 pounds, but this cough has taken a lot out of him. He is on

bactrim

for the cough, so hopefully he will start feeling better. OK his vest has

been increased to three times a day and with each of the vest sessions he will

do

albuteral,so he will do this schedule from now on : (morning- albuteral-vest)

(afternoon-abuteral-pulmozyme- vest) and then (evening albuteral-vest). so we

are going to be busy,thats not even including his other meds.Pulmozyme is new

to us, So I am learning all about it, I can't believe it cost over 1400.

dollars a month. 's insurance should take care of it, I have a few

questions about how does one do treatments on the weekends or when your out a

lot? do

they have a nebulizer that can be carried in the car with all the adaptations?

Its funny we went from doing nothing except enzymes to all of this, Hey guess

what, did his first pfts today, his doctors actually said that it was

great for his first time, he even got a certificate for it. I am a little

overwhelmed but that's because I haven't put it down on the schedule, I feel

better when I can track it all on paper charts. so overall is doing

great.

I was concerned about the pulmozyme, I assumed at first that He must be going

to downhill because he was placed on it, but they reassured me that it was

preventive maintenance, so I am all for that. So what kind of experiences do

you

all have with pulmozyme?Ok I have rambled on enough, talk to you all later.

, mommy of 5 years old w/cf/adhd and 2 years old no cf

[Guest guest]

Funny, but it's when I see it all down on paper that I get that overwhelmed

feeling ... it always looks like so much.

It is good to track on paper though, especially when there are a lot of

changes at once. Hopefully, the additions for will prove productive.

M

----- Original Message -----

>I am a little overwhelmed but that's because I haven't put it down on the

schedule, I feel

> better when I can track it all on paper charts.

[Guest guest]

,

My son Colgan has been on Pulmozyme since he was 1 month old. I

feel that it has really kept this cough down. At times when he is

haveing an episode with his " staph that he has cultured twice now " he

really still only coughs in the am and a little at night.

Colgan is only 8 months old so he really does not cough much but I

think that it has a lot to do with the fact that the mucus is moving

easily for the time being anyways.

I guess that I thought that all clinics put kids on this or Mucomyst. I

am wrong though. Our clinic takes part in the clinical trial well not

really trial but they track kids for a long term use of Pulmozyme and

goods vs. bads of this.

Ashauna mom of 2 boys Maxwel and Colgan

[Guest guest]

Abby is also on pulmozyme once a day. She has been using it since

she was diagnosed at 3 months old. I assumed that all children were

using it. During Abby's last pft, they measured her " prior to " and

again " after " giving her albuteral. There was no change in her pft

results. Abby also uses albuteral twice a day. So far, she has not

cultured anything.

Gale

> ,

> My son Colgan has been on Pulmozyme since he was 1 month old.

I

> feel that it has really kept this cough down. At times when he is

> haveing an episode with his " staph that he has cultured twice now "

he

> really still only coughs in the am and a little at night.

> Colgan is only 8 months old so he really does not cough much

but I

> think that it has a lot to do with the fact that the mucus is moving

> easily for the time being anyways.

> I guess that I thought that all clinics put kids on this or

Mucomyst. I

> am wrong though. Our clinic takes part in the clinical trial well

not

> really trial but they track kids for a long term use of Pulmozyme

and

> goods vs. bads of this.

>

> Ashauna mom of 2 boys Maxwel and Colgan