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Re: CF and Asthma

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Hi Barbara,

I don't know about your question, but would it be possible to get Kristy a

compressor and nebulizer to use at home? My daughter feels a neb treatment

helps her asthma much more than a few puffs of ventolin. I am surprised Kristy

doesn't have one. I'd definitely look into getting her one if she doesn't have

one already.

love,

M

mom of Nick age 21 nocf, used to have asthma, and 19 wcf and asthma

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Hi

We do have a compresser and nebuliser at home but when it comes to

asthma meds her specialist hates it being used...too many germs

carried in nebs! (even though we have a few times lately because

Kristy was just too exhausted to do 12 puffs via the spacer at

bedtime). Also got the lecture from the emergency room too about

it's more effective delivery via a spacer. I was quite surprised

when I found out last year 1 neb of ventolin is equal to 12 puffs.

I am lucky enough to have plenty of ventolin nebs left from when my

eldest needed them mid year.

Sometimes I feel like I'm walking a tightrope dealing with doctors :(

Barbara

> Hi Barbara,

> I don't know about your question, but would it be possible to get

Kristy a compressor and nebulizer to use at home? My daughter

feels a neb treatment helps her asthma much more than a few puffs of

ventolin. I am surprised Kristy doesn't have one. I'd definitely

look into getting her one if she doesn't have one already.

>

> love,

> M

> mom of Nick age 21 nocf, used to have asthma, and 19 wcf

and asthma

>

>

>

>

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Barbara,

You mean her CF specialist? Interesting, I feel like I am missing

something, does she have cf? Does she do pulmozyme(Dnase) or

Tobi? " too many germs in nebs " . You know we do sometimes 5 nebs a

day and we have to. I just don't know where they are coming from.

Am I missing something? How old is your child?

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> > Hi Barbara,

> > I don't know about your question, but would it be possible to

get

> Kristy a compressor and nebulizer to use at home? My daughter

> feels a neb treatment helps her asthma much more than a few puffs

of

> ventolin. I am surprised Kristy doesn't have one. I'd definitely

> look into getting her one if she doesn't have one already.

> >

> > love,

> > M

> > mom of Nick age 21 nocf, used to have asthma, and 19 wcf

> and asthma

> >

> >

> >

> >

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Hi

Yes it is her CF specialist. Some time ago Kristy asked if she

could take her atrovent via the nebuliser because it worked so much

better during a hosptial stay (not the normal hospital). Kristy was

informed NO WAY, nebulisers can carry too many germs. I queried

this because Kristy is on Pulmozyme, (and has had nebulised

antibiotics in the past) the doctor informed us that is only because

there isn't another way to take it. Arguing/discussing is not an

option I feel confident about, have to confess I am somewhat

intimidated by this doctor most of the time - trying to find

solutions for this.

Barbara

Mum to Nicky 15 wocf and Kristy 13 wcf

> > > Hi Barbara,

> > > I don't know about your question, but would it be possible to

> get

> > Kristy a compressor and nebulizer to use at home? My daughter

> > feels a neb treatment helps her asthma much more than a few

puffs

> of

> > ventolin. I am surprised Kristy doesn't have one. I'd

definitely

> > look into getting her one if she doesn't have one already.

> > >

> > > love,

> > > M

> > > mom of Nick age 21 nocf, used to have asthma, and 19

wcf

> > and asthma

> > >

> > >

> > >

> > >

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Hi Barbara,

I just saw your signature and realized you are not in the USA, that

might be the difference. We, in the USA, are told to wash all the

neb cups with warm, soapy water and let air dry, desinfect every

other day. I hate the fact that you are intimidated by the doctors

but if you feel like they are doing what is right for her and she is

doing well, that's the most important thing.

I wish you the best.

> > > > Hi Barbara,

> > > > I don't know about your question, but would it be possible to

> > get

> > > Kristy a compressor and nebulizer to use at home? My daughter

> > > feels a neb treatment helps her asthma much more than a few

> puffs

> > of

> > > ventolin. I am surprised Kristy doesn't have one. I'd

> definitely

> > > look into getting her one if she doesn't have one already.

> > > >

> > > > love,

> > > > M

> > > > mom of Nick age 21 nocf, used to have asthma, and 19

> wcf

> > > and asthma

> > > >

> > > >

> > > >

> > > >

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Barbara,

I haven't had any experience yet with CF but I know with my son's

asthma there is different opinions about nebs vs puffers. We go to a

children's hospital ER when our son's asthma gets bad which means

seeing different doctors. Everytime we go the discharge plan is

different. Some want him on neb only, some puffer only, some say use

whatever suites us - it can get confusing.

I discussed this confusion with one specialist and he gave me some

advice I have found very helpful. He said to me " You are a

Liamologist " - in otherwards I am the one that sees him on a daily

basis. I know what works and what doesn't. He expressed that

parents need to feel a vital part of the medical team.

This advice has helped me learn to not be intimidated by the doctors.

Also taking someone with you can really help - especially if you have

a friend in the medical field. (My husband is a nurse - he's great

with the docs "

As far as the neb issue goes - for my son's asthma when he is having

episodes we use the neb. For him it seems to work better.

Hope you find some answers ASAP.

Carolyn in Canada

> > > > Hi Barbara,

> > > > I don't know about your question, but would it be possible to

> > get

> > > Kristy a compressor and nebulizer to use at home? My daughter

> > > feels a neb treatment helps her asthma much more than a few

> puffs

> > of

> > > ventolin. I am surprised Kristy doesn't have one. I'd

> definitely

> > > look into getting her one if she doesn't have one already.

> > > >

> > > > love,

> > > > M

> > > > mom of Nick age 21 nocf, used to have asthma, and 19

> wcf

> > > and asthma

> > > >

> > > >

> > > >

> > > >

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I was wondering about that too, because sometimes we also do around 7 nebs a day

counting pulmozyme and Tobi. The nebs can be boiled or soaked in control 3.

" Too many germs " doesn't really make sense to me either. A breathing treatment

is more effective than the inhaler, imho.

love,

M

Re: CF and Asthma

Barbara,

You mean her CF specialist? Interesting, I feel like I am missing

something, does she have cf? Does she do pulmozyme(Dnase) or

Tobi? " too many germs in nebs " . You know we do sometimes 5 nebs a

day and we have to.

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Hi

We wash all the neb cups daily in warm soapy water and I boil them

every other day.

Barbara

> Hi Barbara,

>

> I just saw your signature and realized you are not in the USA,

that

> might be the difference. We, in the USA, are told to wash all the

> neb cups with warm, soapy water and let air dry, desinfect every

> other day. I hate the fact that you are intimidated by the

doctors

> but if you feel like they are doing what is right for her and she

is

> doing well, that's the most important thing.

> I wish you the best.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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Thanks Carolyn!

It would be so much easier if the info was consistent all the time.

I feel better since speaking to our GP yesterday, his advice was

very similar to what the specialist gave you.

Barbara

> Barbara,

> I haven't had any experience yet with CF but I know with my son's

> asthma there is different opinions about nebs vs puffers. We go to

a

> children's hospital ER when our son's asthma gets bad which means

> seeing different doctors. Everytime we go the discharge plan is

> different. Some want him on neb only, some puffer only, some say

use

> whatever suites us - it can get confusing.

>

> I discussed this confusion with one specialist and he gave me some

> advice I have found very helpful. He said to me " You are a

> Liamologist " - in otherwards I am the one that sees him on a daily

> basis. I know what works and what doesn't. He expressed that

> parents need to feel a vital part of the medical team.

>

> This advice has helped me learn to not be intimidated by the

doctors.

> Also taking someone with you can really help - especially if you

have

> a friend in the medical field. (My husband is a nurse - he's great

> with the docs "

>

> As far as the neb issue goes - for my son's asthma when he is

having

> episodes we use the neb. For him it seems to work better.

>

> Hope you find some answers ASAP.

>

> Carolyn in Canada

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Barbara,

I boiled our neb cups one time, biggest mistake. I was not supposed

to boil them and I damaged them, :-) My kids thought it was funny.

> > Hi Barbara,

> >

> > I just saw your signature and realized you are not in the USA,

> that

> > might be the difference. We, in the USA, are told to wash all

the

> > neb cups with warm, soapy water and let air dry, desinfect every

> > other day. I hate the fact that you are intimidated by the

> doctors

> > but if you feel like they are doing what is right for her and she

> is

> > doing well, that's the most important thing.

> > I wish you the best.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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