To: Parents of CF babies under 6 months of age

J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

I was just thinking, isn't 4months to young to using a nebuliser. Maybe its a dumb question, but it just seems to young.<img src="i/expressions/face-icon-small-confused.gif" border="0">



As for other treatments, we do cpt 20 mins a day, vitabdeks 1/2 cap 3 times a week, creon 5's 10-12 a day, and flucloxacillan oral antibiotics 21/2 ml twice a day.



That's all i can think of right now.....</end quote></div>


I am curious as to what has you thinking this? A neb (depending on the med in it) is to open up the airways and/or loosen secretions. With a CFer (no matter what age) that seems like a positive thing. Just trying to understand where your thoughts are coming from.....
 
E

eli

New member
HI Melissa,

The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.

I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.

They started her on orals ans said she would be on them for the next 5 yrs as preventative.

Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.

I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.

Can you please correct me and help me understand, more about nebs.

I would greatley appreciate it.

<img src="">
 
E

eli

New member
HI Melissa,

The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.

I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.

They started her on orals ans said she would be on them for the next 5 yrs as preventative.

Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.

I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.

Can you please correct me and help me understand, more about nebs.

I would greatley appreciate it.

<img src="">
 
E

eli

New member
HI Melissa,

The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.

I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.

They started her on orals ans said she would be on them for the next 5 yrs as preventative.

Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.

I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.

Can you please correct me and help me understand, more about nebs.

I would greatley appreciate it.

<img src="">
 
R

Ratatosk

Administrator
Staff member
Max has been on albuterol and atrovent nebs (bronchiodialators) & CPT since he was a few weeks old. He was also put on Tobi nebs when he was 3 months old because he cultured PA. Our primary CF doctor is very proactive and stresses preventative lung care. Keep stuff moving up and out.

Our local CF doctors are more reactive "wait and see" attitude. They couldn't believe the meds Max was on when we started going to the clinic. A few months later, I'd read an article about a nurse from that clinic whose child was diagnosed with CF and she was quoted as saying "if he develops lung problems, then there are treatment options to take care of those issues, should they occur".
 
R

Ratatosk

Administrator
Staff member
Max has been on albuterol and atrovent nebs (bronchiodialators) & CPT since he was a few weeks old. He was also put on Tobi nebs when he was 3 months old because he cultured PA. Our primary CF doctor is very proactive and stresses preventative lung care. Keep stuff moving up and out.

Our local CF doctors are more reactive "wait and see" attitude. They couldn't believe the meds Max was on when we started going to the clinic. A few months later, I'd read an article about a nurse from that clinic whose child was diagnosed with CF and she was quoted as saying "if he develops lung problems, then there are treatment options to take care of those issues, should they occur".
 
R

Ratatosk

Administrator
Staff member
Max has been on albuterol and atrovent nebs (bronchiodialators) & CPT since he was a few weeks old. He was also put on Tobi nebs when he was 3 months old because he cultured PA. Our primary CF doctor is very proactive and stresses preventative lung care. Keep stuff moving up and out.

Our local CF doctors are more reactive "wait and see" attitude. They couldn't believe the meds Max was on when we started going to the clinic. A few months later, I'd read an article about a nurse from that clinic whose child was diagnosed with CF and she was quoted as saying "if he develops lung problems, then there are treatment options to take care of those issues, should they occur".
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

HI Melissa,



The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.



I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.



They started her on orals ans said she would be on them for the next 5 yrs as preventative.



Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.



I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.



Can you please correct me and help me understand, more about nebs.



I would greatley appreciate it.



</end quote></div>

I realize every doctor seems to handle things differently which of course makes it very hard for us. Does your little one use ANY type of nebs? Albeuterol or anything? I dont see any reason not to use the nebs at a young age. If could just be the difference in cultures/countries tho. I also ?? having her on oral antibiotics if that is what you mean by "ans". Preventative for infection or inflammation? I wish I could gather all the cotors in the world together to find out the reason for their way of thinking.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

HI Melissa,



The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.



I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.



They started her on orals ans said she would be on them for the next 5 yrs as preventative.



Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.



I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.



Can you please correct me and help me understand, more about nebs.



I would greatley appreciate it.



</end quote></div>

I realize every doctor seems to handle things differently which of course makes it very hard for us. Does your little one use ANY type of nebs? Albeuterol or anything? I dont see any reason not to use the nebs at a young age. If could just be the difference in cultures/countries tho. I also ?? having her on oral antibiotics if that is what you mean by "ans". Preventative for infection or inflammation? I wish I could gather all the cotors in the world together to find out the reason for their way of thinking.
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>

HI Melissa,



The reason i was questioning this is because, i assumed they only use oral antibiotics for infants. I didn't think it was possible for an infant to be on a neb.



I guess also because when i first came on here, i realised that many of you were on nebs and they were never mentioned to me at clinic. So then when i approached them and asked, they just said "its too early to even discuss that", well cross that bridge when we come to it". It won't be for a while.



They started her on orals ans said she would be on them for the next 5 yrs as preventative.



Also a friends daughter with cf has had it real bad for the last. Constant coughing, repeated staph culutres etc and they have never mentioned a neb to her either. Maybe its just these Australian doc's I DON'T KNOW.



I GUESS I WAS WRONG ABOUT 4 MONTHS BEING TOO YOUNG.



Can you please correct me and help me understand, more about nebs.



I would greatley appreciate it.



</end quote></div>

I realize every doctor seems to handle things differently which of course makes it very hard for us. Does your little one use ANY type of nebs? Albeuterol or anything? I dont see any reason not to use the nebs at a young age. If could just be the difference in cultures/countries tho. I also ?? having her on oral antibiotics if that is what you mean by "ans". Preventative for infection or inflammation? I wish I could gather all the cotors in the world together to find out the reason for their way of thinking.
 
E

eli

New member
Sorry the "ans" was meant to be "and", but yes i did mean oral antibiotics. She has been on them since her diagnosis and will continue to do so until age 5.

lol. i wish i could also get all the cf docs on the world together to find out what's going on in their minds. When i asked our cf docs about this last year, they just said that every doc has their own theory. I don't agree with that, i think if they all worked together over the world much more progress would be made.

But the issue with that is, they want to be the ones to find a new treatment, a better way of caring for patients with cf. They want to make the big bucks, so they do their own thing (research)and keep it to themselves unless a positive outcome has been proven.

ON nebs - Olivia does not use any sort of nebs what so ever, i don't even know what the Albeuterol is..........

Thats how much i know about nebs!<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
E

eli

New member
Sorry the "ans" was meant to be "and", but yes i did mean oral antibiotics. She has been on them since her diagnosis and will continue to do so until age 5.

lol. i wish i could also get all the cf docs on the world together to find out what's going on in their minds. When i asked our cf docs about this last year, they just said that every doc has their own theory. I don't agree with that, i think if they all worked together over the world much more progress would be made.

But the issue with that is, they want to be the ones to find a new treatment, a better way of caring for patients with cf. They want to make the big bucks, so they do their own thing (research)and keep it to themselves unless a positive outcome has been proven.

ON nebs - Olivia does not use any sort of nebs what so ever, i don't even know what the Albeuterol is..........

Thats how much i know about nebs!<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
E

eli

New member
Sorry the "ans" was meant to be "and", but yes i did mean oral antibiotics. She has been on them since her diagnosis and will continue to do so until age 5.

lol. i wish i could also get all the cf docs on the world together to find out what's going on in their minds. When i asked our cf docs about this last year, they just said that every doc has their own theory. I don't agree with that, i think if they all worked together over the world much more progress would be made.

But the issue with that is, they want to be the ones to find a new treatment, a better way of caring for patients with cf. They want to make the big bucks, so they do their own thing (research)and keep it to themselves unless a positive outcome has been proven.

ON nebs - Olivia does not use any sort of nebs what so ever, i don't even know what the Albeuterol is..........

Thats how much i know about nebs!<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
Z

ZMansMom

New member
Yes my baby was diagnosed at about two months and has been on a nebulizer since for about four times a day believe it or not. We have been in and out of the hospital too and he is only sx months well not even yet. His tummy rumbles too and he cries when he eats but he has also has reflux too so he is on Zantac and Regilan for that. It is very hard for the neb but you really have to have patiance with them that young because he hates it of course. It is also very important for them to try to sit up straight when you give it to them or they won't get thwat they need.
 
Z

ZMansMom

New member
Yes my baby was diagnosed at about two months and has been on a nebulizer since for about four times a day believe it or not. We have been in and out of the hospital too and he is only sx months well not even yet. His tummy rumbles too and he cries when he eats but he has also has reflux too so he is on Zantac and Regilan for that. It is very hard for the neb but you really have to have patiance with them that young because he hates it of course. It is also very important for them to try to sit up straight when you give it to them or they won't get thwat they need.
 
Z

ZMansMom

New member
Yes my baby was diagnosed at about two months and has been on a nebulizer since for about four times a day believe it or not. We have been in and out of the hospital too and he is only sx months well not even yet. His tummy rumbles too and he cries when he eats but he has also has reflux too so he is on Zantac and Regilan for that. It is very hard for the neb but you really have to have patiance with them that young because he hates it of course. It is also very important for them to try to sit up straight when you give it to them or they won't get thwat they need.
 
K

Keirasmom

New member
Wow! I can' tbelieve there is such a difference in preventive care for CF with all the advancements that have been discovered. My 7 mo ould daughter has been having CPT done since she was about 3 weeks old and we have been doing nebs since she was 2 mo old. We do Xopenex inhaler 2 or 3 times a day and Pulmozyme 1 or 2 times a day depending if she is fighting a cold. Ihave found research showing that patients that do pulmozyme have better over all lung function when used on a consitent basis. There also is research showing that using nebulized hypertonic saline on a consitent basis also increases lung function and over better lung capacity. It allows the cilia in the lungs to function more normally and better gets the mucus out by thinning it. My CF Dr. and I have already discussed that when Keira is 2 we will start with the hypertonic saline. I alredy see a difference in how well she is able to cough productively (sp?) after we use pulmozyme. When she starts getting a cold we up it to twice a day. The one thing I learned if you don't push your Dr. they won't push either. (Liability) I am quickly learning that the best 2 weapons I have to hlep my daughter is by doing my own research (which you can find online medical articles) and ask, ask and ask some more. I may be on a soap box... but I feel and have learned that I have to ask and push for my daughters sake.
I can't image taking a "lets wait and see what develops" attitude.
Rebecca
 
K

Keirasmom

New member
Wow! I can' tbelieve there is such a difference in preventive care for CF with all the advancements that have been discovered. My 7 mo ould daughter has been having CPT done since she was about 3 weeks old and we have been doing nebs since she was 2 mo old. We do Xopenex inhaler 2 or 3 times a day and Pulmozyme 1 or 2 times a day depending if she is fighting a cold. Ihave found research showing that patients that do pulmozyme have better over all lung function when used on a consitent basis. There also is research showing that using nebulized hypertonic saline on a consitent basis also increases lung function and over better lung capacity. It allows the cilia in the lungs to function more normally and better gets the mucus out by thinning it. My CF Dr. and I have already discussed that when Keira is 2 we will start with the hypertonic saline. I alredy see a difference in how well she is able to cough productively (sp?) after we use pulmozyme. When she starts getting a cold we up it to twice a day. The one thing I learned if you don't push your Dr. they won't push either. (Liability) I am quickly learning that the best 2 weapons I have to hlep my daughter is by doing my own research (which you can find online medical articles) and ask, ask and ask some more. I may be on a soap box... but I feel and have learned that I have to ask and push for my daughters sake.
I can't image taking a "lets wait and see what develops" attitude.
Rebecca
 
K

Keirasmom

New member
Wow! I can' tbelieve there is such a difference in preventive care for CF with all the advancements that have been discovered. My 7 mo ould daughter has been having CPT done since she was about 3 weeks old and we have been doing nebs since she was 2 mo old. We do Xopenex inhaler 2 or 3 times a day and Pulmozyme 1 or 2 times a day depending if she is fighting a cold. Ihave found research showing that patients that do pulmozyme have better over all lung function when used on a consitent basis. There also is research showing that using nebulized hypertonic saline on a consitent basis also increases lung function and over better lung capacity. It allows the cilia in the lungs to function more normally and better gets the mucus out by thinning it. My CF Dr. and I have already discussed that when Keira is 2 we will start with the hypertonic saline. I alredy see a difference in how well she is able to cough productively (sp?) after we use pulmozyme. When she starts getting a cold we up it to twice a day. The one thing I learned if you don't push your Dr. they won't push either. (Liability) I am quickly learning that the best 2 weapons I have to hlep my daughter is by doing my own research (which you can find online medical articles) and ask, ask and ask some more. I may be on a soap box... but I feel and have learned that I have to ask and push for my daughters sake.
I can't image taking a "lets wait and see what develops" attitude.
Rebecca
 
E

eli

New member
Hi Rebecca,

You mention in your post that Keira, has a productive cough. Maybe that's why the docs have put her on the neb's etc.

What about chn that don't have a productive cough? My dd hardly ever coughs, and her chest alway's sound clear.

Does that matter? Does that make a difference?

Should she also be on a neb regardless?

Can someone please answer these ??? for me.

I will also ask at our clinic appointment in wed.

Thanks for any info/advice you can share.
 
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