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In a message dated 9/24/2003 9:28:40 AM Central Daylight Time,

tracyrobbins2002@... writes:

Hi all,

I am wondering how other parents obtain the nebulizers that they use. I

didn't know if I could order them with a prescription somewhere online.

We were instructed to use the hospital's homecare service, but they do

not stock the exact mask that we use and they keep changing their

policies (just show up and knock on the door and then when I did that the

second time, " it will be a 4 day wait " ) We use Pari nebs and a silicone

face mask for both albuterol and pulmozyme. The model # for the neb

itself seems interchangeable. However, the new ones seem to feed the

pulmozyme in 7 minutes and the last one took 12. Should there be this much

variation?

Where do you get you medication? They should provide the right equipment at

least the nebulizer cups the hospital order the nebulizer for us and the

CFpharmacy has sent cups to us ever time we order medication. WE don't even have

to

ask for it. Hope this helps. Deb A

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We got ours from the cf clinic. I asked them who would be best to call for

them and they had a supply on hand that had been provided by the

pharmaceutical company.

Tina W.,mother of 17yoa wcf

Re: nebulizers

In a message dated 9/24/2003 9:28:40 AM Central Daylight Time,

tracyrobbins2002@... writes:

Hi all,

I am wondering how other parents obtain the nebulizers that they use. I

didn't know if I could order them with a prescription somewhere online.

We were instructed to use the hospital's homecare service, but they do

not stock the exact mask that we use and they keep changing their

policies (just show up and knock on the door and then when I did that the

second time, " it will be a 4 day wait " ) We use Pari nebs and a silicone

face mask for both albuterol and pulmozyme. The model # for the neb

itself seems interchangeable. However, the new ones seem to feed the

pulmozyme in 7 minutes and the last one took 12. Should there be this much

variation?

Where do you get you medication? They should provide the right equipment at

least the nebulizer cups the hospital order the nebulizer for us and the

CFpharmacy has sent cups to us ever time we order medication. WE don't even

have to

ask for it. Hope this helps. Deb A

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Please tell us more about the band you designed ... materials used, how you

attach it, do you remove it for cleaning/boiling. etc.?

M

> wrote:

> We get ours from the respiratory services department at our clinic, and

they

> also give us as many as we want on clinic day, also. When you say

silicone

> face mask, what exactly do you mean? We use the Pari nebs also, and use

the

> O2 face masks--is that what you are talking about? They don't have any

side

> holes--just one to hook it onto the Pari neb. How do you keep it on? If

> you need any advice on how to keep it on, let me know--I designed a neat

> band that keeps it in place without making the hair in back a big knotted

> mess.

>

> S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

> ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

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How old is he? Cody didn't like it either when he was little. But after he

got a bit older (around 1-1/2 years old), he started playing on the

computer, playing Sesame Street all the time, and he quickly decided he

didn't want US holding him anymore! Too restricting, I guess! LOL LOL So

we explained he could then use the band, and we wore one, too, to show him.

He got used to it pretty quickly when he discovered the freedom he then had.

Good luck with getting your stuff!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

Re: nebulizers

> Yes, that is the same mask. The one without the side holes. We are

concerned that the ones with the side holes could make the pulmozyme go into

his eyes. We just hold it to his face, it works fine. He wouldn't tolerate

anything around his head.

>

>

>

> wrote:

> We get ours from the respiratory services department at our clinic, and

they

> also give us as many as we want on clinic day, also. When you say

silicone

> face mask, what exactly do you mean? We use the Pari nebs also, and use

the

> O2 face masks--is that what you are talking about? They don't have any

side

> holes--just one to hook it onto the Pari neb. How do you keep it on? If

> you need any advice on how to keep it on, let me know--I designed a neat

> band that keeps it in place without making the hair in back a big knotted

> mess.

>

> S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

> ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

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