Re: Needs answers SUPER parents! Infant PFTs and pulmonyze

[Guest guest]

In a message dated 11/10/02 5:20:30 AM Eastern Standard Time,

crystalwood1999@... writes:

> They have started doing Infant lung function testing

> in the US. My son had his first one done last Thursday

Hi Crystal, I wanted them to try this new infant pft on . Because of

the Downs she is unable to perform the other pfts. They said she is too

large for the infant one. Maybe they will make a larger one.

As for the Pulmonzyne (Dnase) has been on it for several years. She

has problems clearing her mucus and this has really helped. I use a Pari neb

with the regular compressor used for albuterol. She gets albuterol before

vest and the Dnase with the vest and it really loosens her up. We have seen

no side effects from this treatment.

Sally

[Guest guest]

In a message dated 11/10/02 5:20:30 AM Eastern Standard Time,

crystalwood1999@... writes:

> They have started doing Infant lung function testing

> in the US. My son had his first one done last Thursday

Hi Crystal, I wanted them to try this new infant pft on . Because of

the Downs she is unable to perform the other pfts. They said she is too

large for the infant one. Maybe they will make a larger one.

As for the Pulmonzyne (Dnase) has been on it for several years. She

has problems clearing her mucus and this has really helped. I use a Pari neb

with the regular compressor used for albuterol. She gets albuterol before

vest and the Dnase with the vest and it really loosens her up. We have seen

no side effects from this treatment.

Sally

[Guest guest]

In a message dated 11/10/02 5:20:30 AM Eastern Standard Time,

crystalwood1999@... writes:

> They have started doing Infant lung function testing

> in the US. My son had his first one done last Thursday

Hi Crystal, I wanted them to try this new infant pft on . Because of

the Downs she is unable to perform the other pfts. They said she is too

large for the infant one. Maybe they will make a larger one.

As for the Pulmonzyne (Dnase) has been on it for several years. She

has problems clearing her mucus and this has really helped. I use a Pari neb

with the regular compressor used for albuterol. She gets albuterol before

vest and the Dnase with the vest and it really loosens her up. We have seen

no side effects from this treatment.

Sally

[Guest guest]

Where do you live? As I understand it, there are only a few places doing infant

pulmonary function (IPF) tests right now...I think the doctor said like 5 in the

world or something like that, some of which are in Australia. (I'm very

thankful that I happen to live near one of the places that does it, in

Arkansas.)

Pulmozyme is administered with the same machine and mask as the albuterol, but

uses a slightly different thing in between (don't know what it's called...the

little chamber where you actually put the med.) My daughter has it every night

before bed. That stuff is liquid gold...$1300.00 per month for it, and it has

to be refrigerated (thank the gods for good insurance!!). The pharmacy told us

that in the summer months, they'll send it home on ice with us, because it can't

get warm for even a little bit. Now, I don't know how well the stuff works,

since we're pretty much on it as a preventive measure. Also, it's hard to tell

about my daughter's mucus, since she's too young to cough it out, so just

swallows it.

Anyhow, hope this helps a little bit...it's about all I know on the subject.

Shanna

mom of Triana, age 2 wcf

Needs answers SUPER parents! Infant PFTs and pulmonyze

Hello everyone! They have started doing Infant lung function testing

in the US. My son had his first one done last Thursday. His results

found muscus and/or some type of restriction in his airways. He has

had three brochs and never cultered anything...they said the mucus

was so far down in the lung the could not touch it with broch. The

doc wanted us to look up pulmonyze to find out more about it. Is it

adminstered with the same machine as abuterol? Is it a separate

treatment from abuterol? How old was your child when they started

pulmonyze? Has it worked in clearing mucus? I had not idea that a

broch would not tell us everything. Now I suppose there is no way

to know what is growing far down in my baby boys lungs. This post

may be confusing--I could not sleep any longer without posting to the

group. Thank you all so very much for your stories and information.

BTW--what happened to getting together? I was out of the loop a week

or so.

Crystal,mother of 18 months

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[Guest guest]

The doctor that invented the Infant PFT test is here in Columbus.

They have been doing this on Abby since she was diagnosed at 3

months. I " think " that the most " telling " test is the CT scan of the

lungs. It is my understanding that there are only two machines in

the US that are fast enough to do a CT of an infant's lungs. They

put the baby to sleep and then do the scan between breaths. If you

want a better explanation, email me privately and I will send you my

daughter's phone number. She could explain this in detail.

Also, Abby has been on pulmozyme (D'Nase) since diagnosis. It is her

last nebuliser treatment of the day. It breaks down the dead white

blood cells that get caught in the mucus. Abby does two treatments

every day.

1st treatment:

Albuterol

PD's

2nd treatment:

Abuterol

PD's

D'Nase

Good Luck,

Gale

>

> Hello everyone! They have started doing Infant lung function

testing

> in the US. My son had his first one done last Thursday. His

results

> found muscus and/or some type of restriction in his airways. He has

> had three brochs and never cultered anything...they said the mucus

> was so far down in the lung the could not touch it with broch. The

> doc wanted us to look up pulmonyze to find out more about it. Is

it

> adminstered with the same machine as abuterol? Is it a separate

> treatment from abuterol? How old was your child when they started

> pulmonyze? Has it worked in clearing mucus? I had not idea that a

> broch would not tell us everything. Now I suppose there is no way

> to know what is growing far down in my baby boys lungs. This post

> may be confusing--I could not sleep any longer without posting to

the

> group. Thank you all so very much for your stories and

information.

> BTW--what happened to getting together? I was out of the loop a

week

> or so.

>

> Crystal,mother of 18 months