When was your child's first lung involvement?

M

Mommy2Zeke

Guest
My little one is going to be turning 1 next month. He has had a horrible time with the gastro side of CF and other problems, but has seemed to avoid lung involvement thus far. We even managed to keep a bad 2-week-long head cold from going into his lungs. (He's only had the one head cold).

Our normal routine is albuterol breathing treatments 2-3 times a day and 45 minutes of CPT each time we do a breathing treatment.

I'm curious if many of you all had children go this long without lung involvement before you had bad spells... or if possibly Zeke has more of a predisposition to gastro issues rather than lung issues?
 
M

Mommy2Zeke

Guest
My little one is going to be turning 1 next month. He has had a horrible time with the gastro side of CF and other problems, but has seemed to avoid lung involvement thus far. We even managed to keep a bad 2-week-long head cold from going into his lungs. (He's only had the one head cold).

Our normal routine is albuterol breathing treatments 2-3 times a day and 45 minutes of CPT each time we do a breathing treatment.

I'm curious if many of you all had children go this long without lung involvement before you had bad spells... or if possibly Zeke has more of a predisposition to gastro issues rather than lung issues?
 
M

Mommy2Zeke

Guest
My little one is going to be turning 1 next month. He has had a horrible time with the gastro side of CF and other problems, but has seemed to avoid lung involvement thus far. We even managed to keep a bad 2-week-long head cold from going into his lungs. (He's only had the one head cold).

Our normal routine is albuterol breathing treatments 2-3 times a day and 45 minutes of CPT each time we do a breathing treatment.

I'm curious if many of you all had children go this long without lung involvement before you had bad spells... or if possibly Zeke has more of a predisposition to gastro issues rather than lung issues?
 
M

Mommy2Zeke

Guest
My little one is going to be turning 1 next month. He has had a horrible time with the gastro side of CF and other problems, but has seemed to avoid lung involvement thus far. We even managed to keep a bad 2-week-long head cold from going into his lungs. (He's only had the one head cold).

Our normal routine is albuterol breathing treatments 2-3 times a day and 45 minutes of CPT each time we do a breathing treatment.

I'm curious if many of you all had children go this long without lung involvement before you had bad spells... or if possibly Zeke has more of a predisposition to gastro issues rather than lung issues?
 
M

Mommy2Zeke

Guest
My little one is going to be turning 1 next month. He has had a horrible time with the gastro side of CF and other problems, but has seemed to avoid lung involvement thus far. We even managed to keep a bad 2-week-long head cold from going into his lungs. (He's only had the one head cold).
<br />
<br />Our normal routine is albuterol breathing treatments 2-3 times a day and 45 minutes of CPT each time we do a breathing treatment.
<br />
<br />I'm curious if many of you all had children go this long without lung involvement before you had bad spells... or if possibly Zeke has more of a predisposition to gastro issues rather than lung issues?
<br />
<br />
 
T

TonyaH

Guest
Hi Jen,
First of all, Zeke is adorable!
My son is now 12 years old. (I guess I should change my signature, huh?) His disease was mostly digestive for the first 8 years of his life. He has always been low weight and heavily dependent on enzymes and prevacid. He did, however, culture pseudomonas here and there from 9 months on, and always seemed to culture staph. Stenotrophomonas showed up often, too. However, any exacerbation he ever had responded very well to oral abx. I would say he was on oral abx approximately three to five times a year. We have done nebs and therapy daily since he was a baby. I am convinced that early intervention and maintenance has kept him very healthy.

At age 8 he started to have a little more trouble fighting exacerbations. By age 9 he started culturing pseudomonas regularly and requiring iv intervention. He has been hospitalized 4 times since then. However, he rebounds very well each time. His lung function is still great and aside from his daily maintenance he lives a very normal life.

I wish I had found this website when Andrew was Zeke's age. It took me a long time to accept the fact that the progression of CF varies from person to person. I was so worried about preparing for the worst that I forgot that it was okay to hope for the best. For some reason my husband and I had it in our minds that we wanted to get Andrew to 18 before he required iv abx. Well, that didn't happen and we were devestated. If I knew then what I know now, I would have known to try my very best to go with the flow. This disease is full of questions, and all we can do is take things one day at a time.
Best of luck to you and your little guy!
Tonya
 
T

TonyaH

Guest
Hi Jen,
First of all, Zeke is adorable!
My son is now 12 years old. (I guess I should change my signature, huh?) His disease was mostly digestive for the first 8 years of his life. He has always been low weight and heavily dependent on enzymes and prevacid. He did, however, culture pseudomonas here and there from 9 months on, and always seemed to culture staph. Stenotrophomonas showed up often, too. However, any exacerbation he ever had responded very well to oral abx. I would say he was on oral abx approximately three to five times a year. We have done nebs and therapy daily since he was a baby. I am convinced that early intervention and maintenance has kept him very healthy.

At age 8 he started to have a little more trouble fighting exacerbations. By age 9 he started culturing pseudomonas regularly and requiring iv intervention. He has been hospitalized 4 times since then. However, he rebounds very well each time. His lung function is still great and aside from his daily maintenance he lives a very normal life.

I wish I had found this website when Andrew was Zeke's age. It took me a long time to accept the fact that the progression of CF varies from person to person. I was so worried about preparing for the worst that I forgot that it was okay to hope for the best. For some reason my husband and I had it in our minds that we wanted to get Andrew to 18 before he required iv abx. Well, that didn't happen and we were devestated. If I knew then what I know now, I would have known to try my very best to go with the flow. This disease is full of questions, and all we can do is take things one day at a time.
Best of luck to you and your little guy!
Tonya
 
T

TonyaH

Guest
Hi Jen,
First of all, Zeke is adorable!
My son is now 12 years old. (I guess I should change my signature, huh?) His disease was mostly digestive for the first 8 years of his life. He has always been low weight and heavily dependent on enzymes and prevacid. He did, however, culture pseudomonas here and there from 9 months on, and always seemed to culture staph. Stenotrophomonas showed up often, too. However, any exacerbation he ever had responded very well to oral abx. I would say he was on oral abx approximately three to five times a year. We have done nebs and therapy daily since he was a baby. I am convinced that early intervention and maintenance has kept him very healthy.

At age 8 he started to have a little more trouble fighting exacerbations. By age 9 he started culturing pseudomonas regularly and requiring iv intervention. He has been hospitalized 4 times since then. However, he rebounds very well each time. His lung function is still great and aside from his daily maintenance he lives a very normal life.

I wish I had found this website when Andrew was Zeke's age. It took me a long time to accept the fact that the progression of CF varies from person to person. I was so worried about preparing for the worst that I forgot that it was okay to hope for the best. For some reason my husband and I had it in our minds that we wanted to get Andrew to 18 before he required iv abx. Well, that didn't happen and we were devestated. If I knew then what I know now, I would have known to try my very best to go with the flow. This disease is full of questions, and all we can do is take things one day at a time.
Best of luck to you and your little guy!
Tonya
 
T

TonyaH

Guest
Hi Jen,
First of all, Zeke is adorable!
My son is now 12 years old. (I guess I should change my signature, huh?) His disease was mostly digestive for the first 8 years of his life. He has always been low weight and heavily dependent on enzymes and prevacid. He did, however, culture pseudomonas here and there from 9 months on, and always seemed to culture staph. Stenotrophomonas showed up often, too. However, any exacerbation he ever had responded very well to oral abx. I would say he was on oral abx approximately three to five times a year. We have done nebs and therapy daily since he was a baby. I am convinced that early intervention and maintenance has kept him very healthy.

At age 8 he started to have a little more trouble fighting exacerbations. By age 9 he started culturing pseudomonas regularly and requiring iv intervention. He has been hospitalized 4 times since then. However, he rebounds very well each time. His lung function is still great and aside from his daily maintenance he lives a very normal life.

I wish I had found this website when Andrew was Zeke's age. It took me a long time to accept the fact that the progression of CF varies from person to person. I was so worried about preparing for the worst that I forgot that it was okay to hope for the best. For some reason my husband and I had it in our minds that we wanted to get Andrew to 18 before he required iv abx. Well, that didn't happen and we were devestated. If I knew then what I know now, I would have known to try my very best to go with the flow. This disease is full of questions, and all we can do is take things one day at a time.
Best of luck to you and your little guy!
Tonya
 
T

TonyaH

Guest
Hi Jen,
<br />First of all, Zeke is adorable!
<br />My son is now 12 years old. (I guess I should change my signature, huh?) His disease was mostly digestive for the first 8 years of his life. He has always been low weight and heavily dependent on enzymes and prevacid. He did, however, culture pseudomonas here and there from 9 months on, and always seemed to culture staph. Stenotrophomonas showed up often, too. However, any exacerbation he ever had responded very well to oral abx. I would say he was on oral abx approximately three to five times a year. We have done nebs and therapy daily since he was a baby. I am convinced that early intervention and maintenance has kept him very healthy.
<br />
<br />At age 8 he started to have a little more trouble fighting exacerbations. By age 9 he started culturing pseudomonas regularly and requiring iv intervention. He has been hospitalized 4 times since then. However, he rebounds very well each time. His lung function is still great and aside from his daily maintenance he lives a very normal life.
<br />
<br />I wish I had found this website when Andrew was Zeke's age. It took me a long time to accept the fact that the progression of CF varies from person to person. I was so worried about preparing for the worst that I forgot that it was okay to hope for the best. For some reason my husband and I had it in our minds that we wanted to get Andrew to 18 before he required iv abx. Well, that didn't happen and we were devestated. If I knew then what I know now, I would have known to try my very best to go with the flow. This disease is full of questions, and all we can do is take things one day at a time.
<br />Best of luck to you and your little guy!
<br />Tonya
 
M

Mommy2Zeke

Guest
Tonya, thanks for the reply. It is always helpful to hear other people's experiences. I am glad Andrew seems to rebound so well! In some ways I feel like we really haven't dealt with CF yet because Zeke's bowel problems have been so much the focus. I've become an expert on his GI issues, but much of CF is still something I haven't yet dealt with to know about beyond what I read in medical journals.

As for the IV antibiotics, Zeke has been on those consistently since birth due to all of his GI issues, so the 'big,bad, IV' isn't so scary to us. He has only required oral antibiotics for the one head cold and one for an ear infection so far.
 
M

Mommy2Zeke

Guest
Tonya, thanks for the reply. It is always helpful to hear other people's experiences. I am glad Andrew seems to rebound so well! In some ways I feel like we really haven't dealt with CF yet because Zeke's bowel problems have been so much the focus. I've become an expert on his GI issues, but much of CF is still something I haven't yet dealt with to know about beyond what I read in medical journals.

As for the IV antibiotics, Zeke has been on those consistently since birth due to all of his GI issues, so the 'big,bad, IV' isn't so scary to us. He has only required oral antibiotics for the one head cold and one for an ear infection so far.
 
M

Mommy2Zeke

Guest
Tonya, thanks for the reply. It is always helpful to hear other people's experiences. I am glad Andrew seems to rebound so well! In some ways I feel like we really haven't dealt with CF yet because Zeke's bowel problems have been so much the focus. I've become an expert on his GI issues, but much of CF is still something I haven't yet dealt with to know about beyond what I read in medical journals.

As for the IV antibiotics, Zeke has been on those consistently since birth due to all of his GI issues, so the 'big,bad, IV' isn't so scary to us. He has only required oral antibiotics for the one head cold and one for an ear infection so far.
 
M

Mommy2Zeke

Guest
Tonya, thanks for the reply. It is always helpful to hear other people's experiences. I am glad Andrew seems to rebound so well! In some ways I feel like we really haven't dealt with CF yet because Zeke's bowel problems have been so much the focus. I've become an expert on his GI issues, but much of CF is still something I haven't yet dealt with to know about beyond what I read in medical journals.

As for the IV antibiotics, Zeke has been on those consistently since birth due to all of his GI issues, so the 'big,bad, IV' isn't so scary to us. He has only required oral antibiotics for the one head cold and one for an ear infection so far.
 
M

Mommy2Zeke

Guest
Tonya, thanks for the reply. It is always helpful to hear other people's experiences. I am glad Andrew seems to rebound so well! In some ways I feel like we really haven't dealt with CF yet because Zeke's bowel problems have been so much the focus. I've become an expert on his GI issues, but much of CF is still something I haven't yet dealt with to know about beyond what I read in medical journals.
<br />
<br />As for the IV antibiotics, Zeke has been on those consistently since birth due to all of his GI issues, so the 'big,bad, IV' isn't so scary to us. He has only required oral antibiotics for the one head cold and one for an ear infection so far.
 
R

Ratatosk

Administrator
Staff member
DS spent his first 6 weeks of life in the NICU due to a bowel obstruction and came home with a cough, which we later found out was bronchitis caused by a bug common to NICUs. He cultured pseudomonas at 3 months without any symptoms. His first year he had a couple colds with a little bit of wheezing -- we increased CPT. Mostly had sinus issues that first year and a couple ear infections.

He cultured HIB and non-mucoid pseudomonas off and on without symptoms, but didn't develop a cough until he had a cold when he was 4, which turned into a bronchial type cough was put on oral cipro which took care of it. When he was 5 he developed a dry throat clearing cough -- I thought it was just a weird habit and then he cultured Steno Malt and was put on Septra.

He's 6 1/2 and we do cpt or vest with albuterol/atrovent nebs 3 times a day, which is what we've done since he was a week or so old.
 
R

Ratatosk

Administrator
Staff member
DS spent his first 6 weeks of life in the NICU due to a bowel obstruction and came home with a cough, which we later found out was bronchitis caused by a bug common to NICUs. He cultured pseudomonas at 3 months without any symptoms. His first year he had a couple colds with a little bit of wheezing -- we increased CPT. Mostly had sinus issues that first year and a couple ear infections.

He cultured HIB and non-mucoid pseudomonas off and on without symptoms, but didn't develop a cough until he had a cold when he was 4, which turned into a bronchial type cough was put on oral cipro which took care of it. When he was 5 he developed a dry throat clearing cough -- I thought it was just a weird habit and then he cultured Steno Malt and was put on Septra.

He's 6 1/2 and we do cpt or vest with albuterol/atrovent nebs 3 times a day, which is what we've done since he was a week or so old.
 
R

Ratatosk

Administrator
Staff member
DS spent his first 6 weeks of life in the NICU due to a bowel obstruction and came home with a cough, which we later found out was bronchitis caused by a bug common to NICUs. He cultured pseudomonas at 3 months without any symptoms. His first year he had a couple colds with a little bit of wheezing -- we increased CPT. Mostly had sinus issues that first year and a couple ear infections.

He cultured HIB and non-mucoid pseudomonas off and on without symptoms, but didn't develop a cough until he had a cold when he was 4, which turned into a bronchial type cough was put on oral cipro which took care of it. When he was 5 he developed a dry throat clearing cough -- I thought it was just a weird habit and then he cultured Steno Malt and was put on Septra.

He's 6 1/2 and we do cpt or vest with albuterol/atrovent nebs 3 times a day, which is what we've done since he was a week or so old.
 
R

Ratatosk

Administrator
Staff member
DS spent his first 6 weeks of life in the NICU due to a bowel obstruction and came home with a cough, which we later found out was bronchitis caused by a bug common to NICUs. He cultured pseudomonas at 3 months without any symptoms. His first year he had a couple colds with a little bit of wheezing -- we increased CPT. Mostly had sinus issues that first year and a couple ear infections.

He cultured HIB and non-mucoid pseudomonas off and on without symptoms, but didn't develop a cough until he had a cold when he was 4, which turned into a bronchial type cough was put on oral cipro which took care of it. When he was 5 he developed a dry throat clearing cough -- I thought it was just a weird habit and then he cultured Steno Malt and was put on Septra.

He's 6 1/2 and we do cpt or vest with albuterol/atrovent nebs 3 times a day, which is what we've done since he was a week or so old.
 
R

Ratatosk

Administrator
Staff member
DS spent his first 6 weeks of life in the NICU due to a bowel obstruction and came home with a cough, which we later found out was bronchitis caused by a bug common to NICUs. He cultured pseudomonas at 3 months without any symptoms. His first year he had a couple colds with a little bit of wheezing -- we increased CPT. Mostly had sinus issues that first year and a couple ear infections.
<br />
<br />He cultured HIB and non-mucoid pseudomonas off and on without symptoms, but didn't develop a cough until he had a cold when he was 4, which turned into a bronchial type cough was put on oral cipro which took care of it. When he was 5 he developed a dry throat clearing cough -- I thought it was just a weird habit and then he cultured Steno Malt and was put on Septra.
<br />
<br />He's 6 1/2 and we do cpt or vest with albuterol/atrovent nebs 3 times a day, which is what we've done since he was a week or so old.
 
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