Re: pulmozyme question

[Guest guest]

Hi Jeanne,

is on it once a day and she is 19. When she was 18 they prescribed

it for her twice a day but we never could get our insurance to pay for it so

the doc said it was OK for her to have it just once a day. Twice a day seems

a bit much for a 2 year old, I would question why he is being treated twice

daily. 's CF is pretty mild so that is why we didn't fight the

insurance to get her on it twice daily, beleive me if her health starts to

fail we will.

Oh and the hoarseness should go away pretty soon.

love,

M

mom of age 19wcf and Nick age 21 nocf

pulmozyme question

> Hello everyone,

>

> I have another question for you regarding pulmozyme. Shaelin, who is

> 2 was started on it twice daily last week. When I reviewed the

> literature, it looks like it is given once daily for young children

> and twice daily as you get older. He also has been a little hoarse

> which is a side effect. I would appreciate any experiences people

> have regarding this medication.

> Thanks Jeanne (foster mom to Shaelin, 2yo wcf)

[Guest guest]

Jeanne,

In the past, the only time my son inhaled Pulmozyme twice a day was

when he had a really bad flare up. But the doctor only allowed him to

inhale it twice a day for no more than three days. After about three

days, always felt like he was drowning in mucous so was glad to

cut back to once-daily again.

Pulmozyme can cause lung bleeds in some people, so you might watch for

that. I'm really surprised they have Shaelin on it twice a day. I

wonder if he's producing huge quantities of really thick mucous

right now, so the doctor wants to thin it quickly. Is he currently

having a flare up and did the doctor talk about reducing the Pulmozyme

in the near future?

My son was put on Pulmozyme when it first came on the market. I

can't even remember when that was. I think he was in 7th grade. But

he's been off it since February of this year (thank you, God).

Now that he's taking 300 mg. of magnesium a day, he's been able to go

off both Pulmozyme and Prilosec. He did buy some Pulmozyme last week

in case he should catch a bug after this last airline trip. We both

seem to have caught something from our flights, but so far he says he

doesn't feel congested enough to resume the Pulmozyme.

Kim

Mom of (23 1/2 with CF and asthma) and (20 1/2 with

asthma no CF)

Hello everyone,

I have another question for you regarding pulmozyme. Shaelin, who

is 2 was started on it twice daily last week. When I reviewed the

literature, it looks like it is given once daily for young children

and twice daily as you get older. He also has been a little hoarse

which is a side effect. I would appreciate any experiences people

have regarding this medication.

Thanks Jeanne (foster mom to Shaelin, 2yo wcf)

[Guest guest]

Hi,

My daughter is four with CF and she is on pulmozyme only once a day. I would

call clinic and double check the dose. Docs make mistakes too. Tell them that

he has been hoarse, maybe they will reduce the dose.

pulmozyme question

Hello everyone,

I have another question for you regarding pulmozyme. Shaelin, who is

2 was started on it twice daily last week. When I reviewed the

literature, it looks like it is given once daily for young children

and twice daily as you get older. He also has been a little hoarse

which is a side effect. I would appreciate any experiences people

have regarding this medication.

Thanks Jeanne (foster mom to Shaelin, 2yo wcf)

[Guest guest]

is now 1 and has been inhaling Pulmozyme twice a day since I

can remember. I think he was maybe 2months when they increased him.

After reading some of the posts though I wonder what the doctor's

reasoning was? He's never had any congestion except when he gets a

cold or something and yet he inhales that and Pulmicort twice a day.

As for hoarseness it does go away. The explanation the doctor gave to

me was that twice a day Pulmozyme was the aggressive approach and was

what most of the children from our clinic did. I read the post about

it possibly causing lung bleeds and am now going to question him on

this.

Hope I helped and thanks to those who helped me!

Michele B

> Hello everyone,

>

> I have another question for you regarding pulmozyme. Shaelin, who

is

> 2 was started on it twice daily last week. When I reviewed the

> literature, it looks like it is given once daily for young children

> and twice daily as you get older. He also has been a little hoarse

> which is a side effect. I would appreciate any experiences people

> have regarding this medication.

> Thanks Jeanne (foster mom to Shaelin, 2yo wcf)

[Guest guest]

is now 1 and has been inhaling Pulmozyme twice a day since I

can remember. I think he was maybe 2months when they increased him.

After reading some of the posts though I wonder what the doctor's

reasoning was? He's never had any congestion except when he gets a

cold or something and yet he inhales that and Pulmicort twice a day.

As for hoarseness it does go away. The explanation the doctor gave to

me was that twice a day Pulmozyme was the aggressive approach and was

what most of the children from our clinic did. I read the post about

it possibly causing lung bleeds and am now going to question him on

this.

Hope I helped and thanks to those who helped me!

Michele B

> Hello everyone,

>

> I have another question for you regarding pulmozyme. Shaelin, who

is

> 2 was started on it twice daily last week. When I reviewed the

> literature, it looks like it is given once daily for young children

> and twice daily as you get older. He also has been a little hoarse

> which is a side effect. I would appreciate any experiences people

> have regarding this medication.

> Thanks Jeanne (foster mom to Shaelin, 2yo wcf)