You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Nebulisers
- Thread starter anonymous
- Start date
I took about a 20 or so year break. I used nebs & did treatments for a bit after dx & then did no more unless in the hospital until a few years ago. Of course this was out of ignorance & denial not because I was making a wise choice. The most time I get away from it now is maybe 1 day. No more because by the end of that first 24 hours I can feel the 18 wheeleer parked on my chest!
I'm going to get on my soap box on this one.
Meds suck. They are a pain. I wish I didn't have to do them - no question.
But here's the gig - we all live in the most advanced countries in the world (US, Canada, Australia, NZ, UK, and other countries in Europe).
We are so FORTUNATE to have meds to trreat our disease. We are just so frickin' blessed.
So many people across the world either live in countries so poor that they don't have access to meds (hispanic CFers in Central & South America, or Sickle Cell patients in Africa, etc).... or meds simply don't exist for their disease.
We owe it to the above people, if not to our selves, to do the meds that we have access to. USE THEM.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll step off my soap box now.
Meds suck. They are a pain. I wish I didn't have to do them - no question.
But here's the gig - we all live in the most advanced countries in the world (US, Canada, Australia, NZ, UK, and other countries in Europe).
We are so FORTUNATE to have meds to trreat our disease. We are just so frickin' blessed.
So many people across the world either live in countries so poor that they don't have access to meds (hispanic CFers in Central & South America, or Sickle Cell patients in Africa, etc).... or meds simply don't exist for their disease.
We owe it to the above people, if not to our selves, to do the meds that we have access to. USE THEM.
<img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'll step off my soap box now.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Why would you take a break from using the nebulizer? Isn't it important to keep stuff in the lungs moving? Liza</end quote></div>
I should have been more specific. How long have you been on a certain medication using nebuliser without a break?
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
Why would you take a break from using the nebulizer? Isn't it important to keep stuff in the lungs moving? Liza</end quote></div>
I should have been more specific. How long have you been on a certain medication using nebuliser without a break?
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
kayleesgrandma
New member
Excuse my ignorance but I dont know much as Kaylee hads only been diagnosed for a year, but she only uses a neb if she is congested. Is this the right thing to do? She uses the vest 3X/day.
When we were small our CF Doc's told mom we needed to do our nebs a minium of three times a day.
That being said my adult docs would like me to also take them at least three times a day. Though with actually having a life and needing to do other things they are usually done once to twice a day.
I have been taking the same meds in it for for about 7 years or so.... now and they still seem to be working ...... mind you I stopped tobra for a year or so while I was pregnant with and breastfeeding my daughter.
That being said my adult docs would like me to also take them at least three times a day. Though with actually having a life and needing to do other things they are usually done once to twice a day.
I have been taking the same meds in it for for about 7 years or so.... now and they still seem to be working ...... mind you I stopped tobra for a year or so while I was pregnant with and breastfeeding my daughter.
kayleesgrandma
New member
Thanks for the info. Wonder why our cf doc is not pushing us to use the neb? My daughter (Kaylees mom) is not to actively involved in her treatment question--think she had denial and thinks Kaylee has just a mild cf. Sorry Caroline-didn't mean to hog your thread.--terri
Terri....each doctors approach is different. The only thing I can say is that at a young age the more you can prevent damage the better off your granddaughter is. For me my nebs open up my airways. If I dont use them (Pulmicort & Albuterol) my airways get tight enough that I cant cough the crap up. Then I also have Pulmozyme, Saline & nebbed antibiotics as according times. If your granddaughters airways seem to be open enough at this point then maybe thats why it hasnt been addressed. Maybe the doc feels she is too young. Only way to know is to ask!
This is confusng for me, i alway's hear of people using neb's and they have never been recommendded /mentioned to me for the use on my daughter.
I have only been told to do manual cpt once a day, enzymes, vitabdeck and Fluclox twice a day and that's all as far as treatment.
The pysio, even mentioned that there was no evidence/enough scientific research to prove that cpt actually works, although people say it does make them feel better.
Sorry Charlotte for using your post to ask this question.
Eli
I have only been told to do manual cpt once a day, enzymes, vitabdeck and Fluclox twice a day and that's all as far as treatment.
The pysio, even mentioned that there was no evidence/enough scientific research to prove that cpt actually works, although people say it does make them feel better.
Sorry Charlotte for using your post to ask this question.
Eli
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>eli</b></i>
This is confusng for me, i alway's hear of people using neb's and they have never been recommendded /mentioned to me for the use on my daughter.
I have only been told to do manual cpt once a day, enzymes, vitabdeck and Fluclox twice a day and that's all as far as treatment.
The pysio, even mentioned that there was no evidence/enough scientific research to prove that cpt actually works, although people say it does make them feel better.
Sorry Charlotte for using your post to ask this question.
Eli</end quote></div>
No probs. The only reason my daughter is using nebuliser is cos she has Pseudomonas. Because it came back on a cough swab she has to be on it for 12 months. She has never been on a nebuliser apart from that. We also do manual cpt twice a day also. What is Fluclox?
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
This is confusng for me, i alway's hear of people using neb's and they have never been recommendded /mentioned to me for the use on my daughter.
I have only been told to do manual cpt once a day, enzymes, vitabdeck and Fluclox twice a day and that's all as far as treatment.
The pysio, even mentioned that there was no evidence/enough scientific research to prove that cpt actually works, although people say it does make them feel better.
Sorry Charlotte for using your post to ask this question.
Eli</end quote></div>
No probs. The only reason my daughter is using nebuliser is cos she has Pseudomonas. Because it came back on a cough swab she has to be on it for 12 months. She has never been on a nebuliser apart from that. We also do manual cpt twice a day also. What is Fluclox?
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
Hi Charlotte, Fluclox is an antibiotic (Flucloxacilan?Flopen)might sound familiar to you.
Our clinic like's to put newly diagnosed infants o anti-b, just as a precaution for the first three years to try and avoid them getting Staph and Pseudo in the first place. But that's not a guarantee, it still happens but minimises the risks.
Hope that helps.
Our clinic like's to put newly diagnosed infants o anti-b, just as a precaution for the first three years to try and avoid them getting Staph and Pseudo in the first place. But that's not a guarantee, it still happens but minimises the risks.
Hope that helps.
We do nebs with CPT 3 x a day. Tobi every other month twice a day and pulmozyme once a day. When Max was diagnosed and I was on maternity leave we were told to do cpt and nebs 4 times a day, since I was home and he had a rough go of it the first couple of months. So far we've only missed one treatment and that was last winter when we were coming back from Mexico -- I'd hoped to do his treatment before catching a connecting flight, but we got stuck in customs.
He's been on Tobi off and on since he was 3 months old. Came home from the hospital with a bug common to NICUs and developed bronchitis, then cultured pseudo shortly afterwards. Had clear culture results for a few months, then pseudo popped up again. He started Pulmozyme last October.
Doing nebs and CPT is all a routine, all habit. Seemed overwhelming at first making the time, realizing that we're in it for the long haul and we'll be doing this for years and year. I spend a lot of time rocking him in the NICU and crying, wondering how we'd make the time to get everything done, realizing that the CF diagnosis was for real and wishing the doctors would show up and say -- it's all a big mistake, we were wrong, he doesn't have CF. No such luck!
Liza mom to an almost 3 year old wcf
He's been on Tobi off and on since he was 3 months old. Came home from the hospital with a bug common to NICUs and developed bronchitis, then cultured pseudo shortly afterwards. Had clear culture results for a few months, then pseudo popped up again. He started Pulmozyme last October.
Doing nebs and CPT is all a routine, all habit. Seemed overwhelming at first making the time, realizing that we're in it for the long haul and we'll be doing this for years and year. I spend a lot of time rocking him in the NICU and crying, wondering how we'd make the time to get everything done, realizing that the CF diagnosis was for real and wishing the doctors would show up and say -- it's all a big mistake, we were wrong, he doesn't have CF. No such luck!
Liza mom to an almost 3 year old wcf
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
We do nebs with CPT 3 x a day. Tobi every other month twice a day and pulmozyme once a day. When Max was diagnosed and I was on maternity leave we were told to do cpt and nebs 4 times a day, since I was home and he had a rough go of it the first couple of months. So far we've only missed one treatment and that was last winter when we were coming back from Mexico -- I'd hoped to do his treatment before catching a connecting flight, but we got stuck in customs.
He's been on Tobi off and on since he was 3 months old. Came home from the hospital with a bug common to NICUs and developed bronchitis, then cultured pseudo shortly afterwards. Had clear culture results for a few months, then pseudo popped up again. He started Pulmozyme last October.
Doing nebs and CPT is all a routine, all habit. Seemed overwhelming at first making the time, realizing that we're in it for the long haul and we'll be doing this for years and year. I spend a lot of time rocking him in the NICU and crying, wondering how we'd make the time to get everything done, realizing that the CF diagnosis was for real and wishing the doctors would show up and say -- it's all a big mistake, we were wrong, he doesn't have CF. No such luck!
Liza mom to an almost 3 year old wcf</end quote></div>
Hi Liza
I felt exactly the same - it was sooo overwhelming, but you just get used to it and learn to live with it. Physio and nebs just a part of our routine too. Must have had loadsa time on our hands before!
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
We do nebs with CPT 3 x a day. Tobi every other month twice a day and pulmozyme once a day. When Max was diagnosed and I was on maternity leave we were told to do cpt and nebs 4 times a day, since I was home and he had a rough go of it the first couple of months. So far we've only missed one treatment and that was last winter when we were coming back from Mexico -- I'd hoped to do his treatment before catching a connecting flight, but we got stuck in customs.
He's been on Tobi off and on since he was 3 months old. Came home from the hospital with a bug common to NICUs and developed bronchitis, then cultured pseudo shortly afterwards. Had clear culture results for a few months, then pseudo popped up again. He started Pulmozyme last October.
Doing nebs and CPT is all a routine, all habit. Seemed overwhelming at first making the time, realizing that we're in it for the long haul and we'll be doing this for years and year. I spend a lot of time rocking him in the NICU and crying, wondering how we'd make the time to get everything done, realizing that the CF diagnosis was for real and wishing the doctors would show up and say -- it's all a big mistake, we were wrong, he doesn't have CF. No such luck!
Liza mom to an almost 3 year old wcf</end quote></div>
Hi Liza
I felt exactly the same - it was sooo overwhelming, but you just get used to it and learn to live with it. Physio and nebs just a part of our routine too. Must have had loadsa time on our hands before!
Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
Yes, but at that age they can't do a sputum sample (unfortunately!). Sputum sample is much more effective, but a cough sway is better than nothing I suppose. You should ask for them to do a cough swab for your daughter at every check up - definitely. We don't just go off these though, more to how she is feeling, etc. She aslo has a cough swab if she has a cold and also after her cold has finished.
Take care.
Charlotte
Take care.
Charlotte