The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
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just some questions
- Thread starter nicole781
- Start date
The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
The nurse from my cf clinic called today......alexa looks good she says, we have to go back in on monday to check her weight and start the formula study she's on. They did a throat culture on her, adn she cultured e coli.....but i'm under teh impression that most cf babies culture this, and that it's not a big deal. does anyone know anything about this? Also, they said that they dont want to start cpt for a few months b/c she's still small and they dont want to break ribs or anything....did most of you who had a dx from birth wai a few months? And also they said that they would give us a nebulizer when we went in next, wheat kind of preventative meds do small babies go on? I'm still learning so much about this, and i want to go into this visit with as much knowledge as i possibly can.
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
First of all, congratulations to you on being proactive and doing your homework, learning as much as you can.
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
I've never heard that most cf babies culture e.coli, and that just doesn't makes much sense to me, but maybe someone else can shed some light on that for you. If not, please ask the clinic more questions about it.
Emily started cpt when she was 5 days old, the day after her diagnosis. If you are trained by a qualified respitory therapist, you will not break ribs or endanger your child in any way. Please push them to train you NOW!!! If you wait until she is a few months older she will FIGHT you everytime you have to do it. IF you start now while she is small, it just becomes something you do, and she won't know any different. Also, not doing it NOW and allowing mucus to build up sets her up for more respitory infections as you get into the colder months. There is NO reason to wait with cpt, and I think most people here will agree.
With your nebulizer you will probably get albuterol (or, she might take this in a "puffer" inhaler form like for asthma...) and probably Pulmozyme. Maybe Flovent (also a puffer). These (in order) hlep to open the airways, break down mucus and reduce inflamation of the lungs. Basically they keep her lungs clear and healthy. We started with Albuterol immediatly, and then added the nebulizer when she first cultured psuedomonas at about 6 weeks old. We have done some combination of the above things and inhaled antibiotics ever since.
Prepare yourself to really push the doctors and nurses to get the best for Alexa. I would ask that they start you on pt now and do the inhalers/nebs that go with it NOW. Her health is too precious to waste!
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
M
mneville
Guest
Aidan also started CPT at 11 days old. You will not break ribs if you do it right! Ask the RT to show you how. It really isn't that different than burping and our son grew to love it- it is soothing for little babies usually..
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
Aidan also did that formula study- we loved it! Free formula and he did awesome with whatever he got- we still don't know. Best of luck.
Megan
We started doing CPT when DS was 5 days old. The RTs brought us little percussion cups, but also taught us how to use our hands, which was much easier for us than those cups. Basically showed us to avoid the spine... And when our doctor came in to see how we were doing with CPT, he indicated we should actually be "whacking" him harder. Worked great 'cuz it actually calmed him -- he got so used to it, he'd fall asleep. Others who've had to start CPT on their older children 18 months, have said it's a LOT more difficult to start up later. He also started albuterol and atrovent nebs the same time we started CPT
DS was in the NICU for 6 weeks recovering from bowel obstruction/me surgery and he sure as heck didn't culture E-coli, but he did come home with a cough and cultured a similar bug enterbactor cochlae and he was put on Septra, Tobi and I think another oral antibiotic.
DS was in the NICU for 6 weeks recovering from bowel obstruction/me surgery and he sure as heck didn't culture E-coli, but he did come home with a cough and cultured a similar bug enterbactor cochlae and he was put on Septra, Tobi and I think another oral antibiotic.
We started doing CPT when DS was 5 days old. The RTs brought us little percussion cups, but also taught us how to use our hands, which was much easier for us than those cups. Basically showed us to avoid the spine... And when our doctor came in to see how we were doing with CPT, he indicated we should actually be "whacking" him harder. Worked great 'cuz it actually calmed him -- he got so used to it, he'd fall asleep. Others who've had to start CPT on their older children 18 months, have said it's a LOT more difficult to start up later. He also started albuterol and atrovent nebs the same time we started CPT
DS was in the NICU for 6 weeks recovering from bowel obstruction/me surgery and he sure as heck didn't culture E-coli, but he did come home with a cough and cultured a similar bug enterbactor cochlae and he was put on Septra, Tobi and I think another oral antibiotic.
DS was in the NICU for 6 weeks recovering from bowel obstruction/me surgery and he sure as heck didn't culture E-coli, but he did come home with a cough and cultured a similar bug enterbactor cochlae and he was put on Septra, Tobi and I think another oral antibiotic.