Questions ablout Pulmozyne

[Guest guest]

My daughter is 3 years old. She was diagnosed at 13 months. SHortly

after her cf diagnosis they found she had traceal/bronchial malacia

(sp?), but she has almost grown out of itWe do the vest for 20

minutes twice a day. The only time she is on any inhaled medication

is when she gets a chest cold, then she is put on Albuterol and

Atravent. Thus far she has only cultured stenotropamonas (sp?) and

staph. Should I inquire about putting her on Pulmozyne? I had

complete faith in our cf docs, but now I am questioning why she

hasn't already been put on this. Apparently it is commonly used.

~Wendi

mom to Peyton

[Guest guest]

Howde,

You could ask..it is really a preventative drug/treatment . My

granddaughter has been on it awhile & she has NEVER had any lung

involvement...She is 19yrs. Best wishes. You will feel better if you at

least ask.

LOVE & HUGS, grandmomBEV

Questions ablout Pulmozyne

My daughter is 3 years old. She was diagnosed at 13 months. SHortly

after her cf diagnosis they found she had traceal/bronchial malacia

(sp?), but she has almost grown out of itWe do the vest for 20

minutes twice a day. The only time she is on any inhaled medication

is when she gets a chest cold, then she is put on Albuterol and

Atravent. Thus far she has only cultured stenotropamonas (sp?) and

staph. Should I inquire about putting her on Pulmozyne? I had

complete faith in our cf docs, but now I am questioning why she

hasn't already been put on this. Apparently it is commonly used.

~Wendi

mom to Peyton

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

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]

, I would recommend the Pulmozyme. My son started it as soon as it was

available on the market and says he could feel a difference the first time

he used it. He is 19 now and has only been in the hospital when he was 7

with pneumonia and that was right after he was diagnosed. He does Serevent,

Flovent, Pulmozyme, Albutoral as needed, and TOBI as needed. Takes his

ADEKS and pepcid for acid reflux and has had a very productive and enjoyable

life. He is going to college in the fall and is highly anticipating the fun

he is going to have. He played baseball his entire life and has always been

very active, which i think is one of the most important aspects of staying

healthy with this disease. Well thats just my little 2 cents hope it helps

cindy

>

>Reply-To: cfparents

>To: cfparents

>Subject: Questions ablout Pulmozyne

>Date: Thu, 12 Jun 2003 13:40:16 -0000

>

>My daughter is 3 years old. She was diagnosed at 13 months. SHortly

>after her cf diagnosis they found she had traceal/bronchial malacia

>(sp?), but she has almost grown out of itWe do the vest for 20

>minutes twice a day. The only time she is on any inhaled medication

>is when she gets a chest cold, then she is put on Albuterol and

>Atravent. Thus far she has only cultured stenotropamonas (sp?) and

>staph. Should I inquire about putting her on Pulmozyne? I had

>complete faith in our cf docs, but now I am questioning why she

>hasn't already been put on this. Apparently it is commonly used.

>~Wendi

>mom to Peyton

>

>

>

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

>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]

Wendi,

I was just wondering if your daughter's CF issues are mostly GI related? Maybe

if she has more GI issues she doesn't need the pulmozyme? If they are equally

lung and GI I would think she would be on inhaled meds daily. My daughter has

been on Albuterol since before she was diagnosed (they thought it was asthma

and/or allergies) along with that she started on cromolyn sodium at dx. (she

takes both at least twice a day when she is well and up to four times daily when

ill) With every inhaled med treatment she also gets Chest PT. started

mucomyst at dx but was taken off of it later. Then she was put on pulmozyme.

Early on she had a lot of lung issues. Before I'd worry about the pulmozyme I

think I might be wondering about other inhaled meds. (I know everyone's CF is

different, but most of the people I have talked to take some kind of nebulized

meds daily) Just what I have heard/experienced.

Questions ablout Pulmozyne

My daughter is 3 years old. She was diagnosed at 13 months. SHortly

after her cf diagnosis they found she had traceal/bronchial malacia

(sp?), but she has almost grown out of itWe do the vest for 20

minutes twice a day. The only time she is on any inhaled medication

is when she gets a chest cold, then she is put on Albuterol and

Atravent. Thus far she has only cultured stenotropamonas (sp?) and

staph. Should I inquire about putting her on Pulmozyne? I had

complete faith in our cf docs, but now I am questioning why she

hasn't already been put on this. Apparently it is commonly used.

~Wendi

mom to Peyton

[Guest guest]

-

Peyton does have GI issues, but they have been pretty much been

solved with enzymes. I would says she has more lung problems than

GI. Lots of pneumonia, chest colds and mucous. We go back to clinic

in July at that time they will be doing a CT scan on her lungs. They

believe she will have lots of imflamation due to the bronchial

malacia (i have no idea how to spell that). I am definately going to

ask about inhaled meds.

Thanks!

~Wendi

> Wendi,

> I was just wondering if your daughter's CF issues are mostly GI

related? Maybe if she has more GI issues she doesn't need the

pulmozyme? If they are equally lung and GI I would think she would be

on inhaled meds daily. My daughter has been on Albuterol since

before she was diagnosed (they thought it was asthma and/or

allergies) along with that she started on cromolyn sodium at dx. (she

takes both at least twice a day when she is well and up to four times

daily when ill) With every inhaled med treatment she also gets Chest

PT. started mucomyst at dx but was taken off of it later.

Then she was put on pulmozyme. Early on she had a lot of lung

issues. Before I'd worry about the pulmozyme I think I might be

wondering about other inhaled meds. (I know everyone's CF is

different, but most of the people I have talked to take some kind of

nebulized meds daily) Just what I have heard/experienced.

>

> Questions ablout Pulmozyne

>

>

> My daughter is 3 years old. She was diagnosed at 13 months.

SHortly

> after her cf diagnosis they found she had traceal/bronchial

malacia

> (sp?), but she has almost grown out of itWe do the vest for 20

> minutes twice a day. The only time she is on any inhaled

medication

> is when she gets a chest cold, then she is put on Albuterol and

> Atravent. Thus far she has only cultured stenotropamonas (sp?)

and

> staph. Should I inquire about putting her on Pulmozyne? I had

> complete faith in our cf docs, but now I am questioning why she

> hasn't already been put on this. Apparently it is commonly used.

> ~Wendi

> mom to Peyton

>

>

>

[Guest guest]

Actually, the GI issues were all my granddaughter has. In fact she had a

encomium illusat birth & surgery for that. She has recently had her

appendix burst & they medicated & operated on her. .actually used too

much morphine & hurt her, instead of it helping. her now also has to

take meds for her liver. SHE HAS been on pulmozyme for several years to

prevent her lungs for getting filled.--infected or whatever ,as a

preventive the docs said. So, it is something that could possibly need

it , I think maybe even bringing it up to the doc would be a good idea.

Best wishes with this :)

LOVE & HUGS, grandmomBEV

Re: Questions ablout Pulmozyne

Wendi,

I was just wondering if your daughter's CF issues are mostly GI related?

Maybe if she has more GI issues she doesn't need the pulmozyme? If they

are equally lung and GI I would think she would be on inhaled meds

daily. My daughter has been on Albuterol since before she was diagnosed

(they thought it was asthma and/or allergies) along with that she

started on cromolyn sodium at dx. (she takes both at least twice a day

when she is well and up to four times daily when ill) With every inhaled

med treatment she also gets Chest PT. started mucomyst at dx but

was taken off of it later. Then she was put on pulmozyme. Early on she

had a lot of lung issues. Before I'd worry about the pulmozyme I think

I might be wondering about other inhaled meds. (I know everyone's CF is

different, but most of the people I have talked to take some kind of

nebulized meds daily) Just what I have heard/experienced.

Questions ablout Pulmozyne

My daughter is 3 years old. She was diagnosed at 13 months. SHortly

after her cf diagnosis they found she had traceal/bronchial malacia

(sp?), but she has almost grown out of itWe do the vest for 20

minutes twice a day. The only time she is on any inhaled medication

is when she gets a chest cold, then she is put on Albuterol and

Atravent. Thus far she has only cultured stenotropamonas (sp?) and

staph. Should I inquire about putting her on Pulmozyne? I had

complete faith in our cf docs, but now I am questioning why she

hasn't already been put on this. Apparently it is commonly used.

~Wendi

mom to Peyton