meds. and nebs.

[babyluke]

Ok, so I only get to come on the site every so often and when I do I go on this marathon of posting--sorry about that!!! But when I start to read the other posts I learn so much and realize how much I really don't know.
I guess I am confused now because I read about these different meds. that Luke is not on and I am wondering--should he be?
He has thus far not had any positive cultures, although we have been hospitalized three times--once at diagnosis, once because he was just sick and not getting better (did 10 days of IV's) and then again about a year ago for g-tube and nissan(also did a course of antibiotics at that admission b/c he was sick). We have done some oral antibiotics for ear infections and oral prednisone for 5 days (each time) 3 times this winter.
He currently takes creon 5, ADEK, iron, and zantac and does albuterol 2 x's per day, pulmicort 2 x's per day and pulmizyme 1 x per day. I use over the counter saline drops for his nose when he gets stuffy. We do the vest morning and night with his nebs.
I guess my question is--is this the "normal" treatment for a 19 month old? I read some of the posts and think--I have never heard about that med/neb. And then I think--should I have...I love our clinic, but sometimes I have had to bring things to their attention--like the need for the Zantac and that he was probably big enough for the vest. And that is fine. He is my son and I know him better than anyone, so I don't mind to be on top of his care. I guess I am just paranoid about whether or not I AM actually on top of it. We have clinic appt. again next week and I am just wanting to be prepared for it. I appreciate all the feed back. Sorry this is so long!
Angela, Mom to 7 terrific kids, including Luke, 19 monts old with CF

 

[babyluke]

Ok, so I only get to come on the site every so often and when I do I go on this marathon of posting--sorry about that!!! But when I start to read the other posts I learn so much and realize how much I really don't know.
I guess I am confused now because I read about these different meds. that Luke is not on and I am wondering--should he be?
He has thus far not had any positive cultures, although we have been hospitalized three times--once at diagnosis, once because he was just sick and not getting better (did 10 days of IV's) and then again about a year ago for g-tube and nissan(also did a course of antibiotics at that admission b/c he was sick). We have done some oral antibiotics for ear infections and oral prednisone for 5 days (each time) 3 times this winter.
He currently takes creon 5, ADEK, iron, and zantac and does albuterol 2 x's per day, pulmicort 2 x's per day and pulmizyme 1 x per day. I use over the counter saline drops for his nose when he gets stuffy. We do the vest morning and night with his nebs.
I guess my question is--is this the "normal" treatment for a 19 month old? I read some of the posts and think--I have never heard about that med/neb. And then I think--should I have...I love our clinic, but sometimes I have had to bring things to their attention--like the need for the Zantac and that he was probably big enough for the vest. And that is fine. He is my son and I know him better than anyone, so I don't mind to be on top of his care. I guess I am just paranoid about whether or not I AM actually on top of it. We have clinic appt. again next week and I am just wanting to be prepared for it. I appreciate all the feed back. Sorry this is so long!
Angela, Mom to 7 terrific kids, including Luke, 19 monts old with CF

 

[babyluke]

Ok, so I only get to come on the site every so often and when I do I go on this marathon of posting--sorry about that!!! But when I start to read the other posts I learn so much and realize how much I really don't know.
I guess I am confused now because I read about these different meds. that Luke is not on and I am wondering--should he be?
He has thus far not had any positive cultures, although we have been hospitalized three times--once at diagnosis, once because he was just sick and not getting better (did 10 days of IV's) and then again about a year ago for g-tube and nissan(also did a course of antibiotics at that admission b/c he was sick). We have done some oral antibiotics for ear infections and oral prednisone for 5 days (each time) 3 times this winter.
He currently takes creon 5, ADEK, iron, and zantac and does albuterol 2 x's per day, pulmicort 2 x's per day and pulmizyme 1 x per day. I use over the counter saline drops for his nose when he gets stuffy. We do the vest morning and night with his nebs.
I guess my question is--is this the "normal" treatment for a 19 month old? I read some of the posts and think--I have never heard about that med/neb. And then I think--should I have...I love our clinic, but sometimes I have had to bring things to their attention--like the need for the Zantac and that he was probably big enough for the vest. And that is fine. He is my son and I know him better than anyone, so I don't mind to be on top of his care. I guess I am just paranoid about whether or not I AM actually on top of it. We have clinic appt. again next week and I am just wanting to be prepared for it. I appreciate all the feed back. Sorry this is so long!
Angela, Mom to 7 terrific kids, including Luke, 19 monts old with CF

 

[babyluke]

Ok, so I only get to come on the site every so often and when I do I go on this marathon of posting--sorry about that!!! But when I start to read the other posts I learn so much and realize how much I really don't know.
I guess I am confused now because I read about these different meds. that Luke is not on and I am wondering--should he be?
He has thus far not had any positive cultures, although we have been hospitalized three times--once at diagnosis, once because he was just sick and not getting better (did 10 days of IV's) and then again about a year ago for g-tube and nissan(also did a course of antibiotics at that admission b/c he was sick). We have done some oral antibiotics for ear infections and oral prednisone for 5 days (each time) 3 times this winter.
He currently takes creon 5, ADEK, iron, and zantac and does albuterol 2 x's per day, pulmicort 2 x's per day and pulmizyme 1 x per day. I use over the counter saline drops for his nose when he gets stuffy. We do the vest morning and night with his nebs.
I guess my question is--is this the "normal" treatment for a 19 month old? I read some of the posts and think--I have never heard about that med/neb. And then I think--should I have...I love our clinic, but sometimes I have had to bring things to their attention--like the need for the Zantac and that he was probably big enough for the vest. And that is fine. He is my son and I know him better than anyone, so I don't mind to be on top of his care. I guess I am just paranoid about whether or not I AM actually on top of it. We have clinic appt. again next week and I am just wanting to be prepared for it. I appreciate all the feed back. Sorry this is so long!
Angela, Mom to 7 terrific kids, including Luke, 19 monts old with CF

 

[babyluke]

Ok, so I only get to come on the site every so often and when I do I go on this marathon of posting--sorry about that!!! But when I start to read the other posts I learn so much and realize how much I really don't know.
<br />I guess I am confused now because I read about these different meds. that Luke is not on and I am wondering--should he be?
<br />He has thus far not had any positive cultures, although we have been hospitalized three times--once at diagnosis, once because he was just sick and not getting better (did 10 days of IV's) and then again about a year ago for g-tube and nissan(also did a course of antibiotics at that admission b/c he was sick). We have done some oral antibiotics for ear infections and oral prednisone for 5 days (each time) 3 times this winter.
<br />He currently takes creon 5, ADEK, iron, and zantac and does albuterol 2 x's per day, pulmicort 2 x's per day and pulmizyme 1 x per day. I use over the counter saline drops for his nose when he gets stuffy. We do the vest morning and night with his nebs.
<br />I guess my question is--is this the "normal" treatment for a 19 month old? I read some of the posts and think--I have never heard about that med/neb. And then I think--should I have...I love our clinic, but sometimes I have had to bring things to their attention--like the need for the Zantac and that he was probably big enough for the vest. And that is fine. He is my son and I know him better than anyone, so I don't mind to be on top of his care. I guess I am just paranoid about whether or not I AM actually on top of it. We have clinic appt. again next week and I am just wanting to be prepared for it. I appreciate all the feed back. Sorry this is so long!
<br />Angela, Mom to 7 terrific kids, including Luke, 19 monts old with CF

 

[valigirl21]

Noah started taking nebs at 6 mths, Albuterol and a preventative, but I can't remember what it was called, and saline nose spray. Also prednisone if he was sick.

 

[valigirl21]

Noah started taking nebs at 6 mths, Albuterol and a preventative, but I can't remember what it was called, and saline nose spray. Also prednisone if he was sick.

 

[valigirl21]

Noah started taking nebs at 6 mths, Albuterol and a preventative, but I can't remember what it was called, and saline nose spray. Also prednisone if he was sick.

 

[valigirl21]

Noah started taking nebs at 6 mths, Albuterol and a preventative, but I can't remember what it was called, and saline nose spray. Also prednisone if he was sick.

 

[valigirl21]

Noah started taking nebs at 6 mths, Albuterol and a preventative, but I can't remember what it was called, and saline nose spray. Also prednisone if he was sick.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction/meconium illeus. We started doing Chest Physiotherapy with Albuterol/Atrovent nebs when he was a week old -- we did this 4 times a day until I went back to work after 12 weeks. He started Tobi nebs at 3 months when he got bronchitis due to a bug he brought home from the NICU. We still do CPT/vest with nebs 3 times a day. More if he's sick.

We also came home from the hospital with prescriptions for ADEKS vitamin drops, vitamin K, zantac, enzymes, actigall (bile salts) and keflex (antibiotic). Throughout the first year when he got ear and sinus infections, he was put on augmentin. When he was 2 1/2 the doctors added pulmozyme once a day, zithromax daily. When he cultured another bug when he turned 4 another ABX was added to the mix.

Our doctor in the city is much more proactive and wanted us to practice good lung health care from day one even though DS was born with normal lungs, eventually with infections, sticky mucus, the lungs will be affected.

The local clinic on the other hand is reactive. Only prescribe CPT, nebs if there are symptoms. In fact they tried to discourage us from doing what we were doing, and we'd always get lectures about all the meds DS was on, questions about ABX resistance...

I think sometimes that DS is on a lot of stuff. Every time a new med is added, I get a little down. There are also meds that DS isn't one when compared with others -- HTS, mucomyst... So I wonder, too based on comments here.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction/meconium illeus. We started doing Chest Physiotherapy with Albuterol/Atrovent nebs when he was a week old -- we did this 4 times a day until I went back to work after 12 weeks. He started Tobi nebs at 3 months when he got bronchitis due to a bug he brought home from the NICU. We still do CPT/vest with nebs 3 times a day. More if he's sick.

We also came home from the hospital with prescriptions for ADEKS vitamin drops, vitamin K, zantac, enzymes, actigall (bile salts) and keflex (antibiotic). Throughout the first year when he got ear and sinus infections, he was put on augmentin. When he was 2 1/2 the doctors added pulmozyme once a day, zithromax daily. When he cultured another bug when he turned 4 another ABX was added to the mix.

Our doctor in the city is much more proactive and wanted us to practice good lung health care from day one even though DS was born with normal lungs, eventually with infections, sticky mucus, the lungs will be affected.

The local clinic on the other hand is reactive. Only prescribe CPT, nebs if there are symptoms. In fact they tried to discourage us from doing what we were doing, and we'd always get lectures about all the meds DS was on, questions about ABX resistance...

I think sometimes that DS is on a lot of stuff. Every time a new med is added, I get a little down. There are also meds that DS isn't one when compared with others -- HTS, mucomyst... So I wonder, too based on comments here.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction/meconium illeus. We started doing Chest Physiotherapy with Albuterol/Atrovent nebs when he was a week old -- we did this 4 times a day until I went back to work after 12 weeks. He started Tobi nebs at 3 months when he got bronchitis due to a bug he brought home from the NICU. We still do CPT/vest with nebs 3 times a day. More if he's sick.

We also came home from the hospital with prescriptions for ADEKS vitamin drops, vitamin K, zantac, enzymes, actigall (bile salts) and keflex (antibiotic). Throughout the first year when he got ear and sinus infections, he was put on augmentin. When he was 2 1/2 the doctors added pulmozyme once a day, zithromax daily. When he cultured another bug when he turned 4 another ABX was added to the mix.

Our doctor in the city is much more proactive and wanted us to practice good lung health care from day one even though DS was born with normal lungs, eventually with infections, sticky mucus, the lungs will be affected.

The local clinic on the other hand is reactive. Only prescribe CPT, nebs if there are symptoms. In fact they tried to discourage us from doing what we were doing, and we'd always get lectures about all the meds DS was on, questions about ABX resistance...

I think sometimes that DS is on a lot of stuff. Every time a new med is added, I get a little down. There are also meds that DS isn't one when compared with others -- HTS, mucomyst... So I wonder, too based on comments here.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction/meconium illeus. We started doing Chest Physiotherapy with Albuterol/Atrovent nebs when he was a week old -- we did this 4 times a day until I went back to work after 12 weeks. He started Tobi nebs at 3 months when he got bronchitis due to a bug he brought home from the NICU. We still do CPT/vest with nebs 3 times a day. More if he's sick.

We also came home from the hospital with prescriptions for ADEKS vitamin drops, vitamin K, zantac, enzymes, actigall (bile salts) and keflex (antibiotic). Throughout the first year when he got ear and sinus infections, he was put on augmentin. When he was 2 1/2 the doctors added pulmozyme once a day, zithromax daily. When he cultured another bug when he turned 4 another ABX was added to the mix.

Our doctor in the city is much more proactive and wanted us to practice good lung health care from day one even though DS was born with normal lungs, eventually with infections, sticky mucus, the lungs will be affected.

The local clinic on the other hand is reactive. Only prescribe CPT, nebs if there are symptoms. In fact they tried to discourage us from doing what we were doing, and we'd always get lectures about all the meds DS was on, questions about ABX resistance...

I think sometimes that DS is on a lot of stuff. Every time a new med is added, I get a little down. There are also meds that DS isn't one when compared with others -- HTS, mucomyst... So I wonder, too based on comments here.

 

[Ratatosk]

DS was diagnosed shortly after he was born due to a bowel obstruction/meconium illeus. We started doing Chest Physiotherapy with Albuterol/Atrovent nebs when he was a week old -- we did this 4 times a day until I went back to work after 12 weeks. He started Tobi nebs at 3 months when he got bronchitis due to a bug he brought home from the NICU. We still do CPT/vest with nebs 3 times a day. More if he's sick.
<br />
<br />We also came home from the hospital with prescriptions for ADEKS vitamin drops, vitamin K, zantac, enzymes, actigall (bile salts) and keflex (antibiotic). Throughout the first year when he got ear and sinus infections, he was put on augmentin. When he was 2 1/2 the doctors added pulmozyme once a day, zithromax daily. When he cultured another bug when he turned 4 another ABX was added to the mix.
<br />
<br />Our doctor in the city is much more proactive and wanted us to practice good lung health care from day one even though DS was born with normal lungs, eventually with infections, sticky mucus, the lungs will be affected.
<br />
<br />The local clinic on the other hand is reactive. Only prescribe CPT, nebs if there are symptoms. In fact they tried to discourage us from doing what we were doing, and we'd always get lectures about all the meds DS was on, questions about ABX resistance...
<br />
<br />I think sometimes that DS is on a lot of stuff. Every time a new med is added, I get a little down. There are also meds that DS isn't one when compared with others -- HTS, mucomyst... So I wonder, too based on comments here.

 

[folione]

Your treatments sound right in line with what is typical for a CFer without any chronic problems/bugs. It is what my son had for his regimen the first few years. When he started at preschool and getting colds all winter long he started using augmentin fairly frequently; he also started Hypersal at about age 5 and switched from zantac to prevacid around 3 or 4 years.

 

[folione]

Your treatments sound right in line with what is typical for a CFer without any chronic problems/bugs. It is what my son had for his regimen the first few years. When he started at preschool and getting colds all winter long he started using augmentin fairly frequently; he also started Hypersal at about age 5 and switched from zantac to prevacid around 3 or 4 years.

 

[folione]

Your treatments sound right in line with what is typical for a CFer without any chronic problems/bugs. It is what my son had for his regimen the first few years. When he started at preschool and getting colds all winter long he started using augmentin fairly frequently; he also started Hypersal at about age 5 and switched from zantac to prevacid around 3 or 4 years.

 

[folione]

Your treatments sound right in line with what is typical for a CFer without any chronic problems/bugs. It is what my son had for his regimen the first few years. When he started at preschool and getting colds all winter long he started using augmentin fairly frequently; he also started Hypersal at about age 5 and switched from zantac to prevacid around 3 or 4 years.

 

[folione]

Your treatments sound right in line with what is typical for a CFer without any chronic problems/bugs. It is what my son had for his regimen the first few years. When he started at preschool and getting colds all winter long he started using augmentin fairly frequently; he also started Hypersal at about age 5 and switched from zantac to prevacid around 3 or 4 years.