Re: Needs answers SUPER parents! Infant PFTs and pulmonyze

[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