New here and question to cf'ers (or parents of)

[Breezy]

I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.

 

[Breezy]

I agree with everyone here. While I don't have CF, I've got bronchiectasis which requires the same amounts of treatments pretty much as it affects the lungs.

I was a lot like Melissa (Jazzysmom). When i first got diagnosed I rarely did my physio and all that. I was supposed to do it 3 times a day and was lucky if i did it once a week. I always took my meds mind you. But even still, by just not doing physio, i sit here 4 years later, with a lung function of 27% and in need of a tx. All that time i could have been clearing my chest and preventing damage and I didn't, b/c i didn't feel like I needed it. I'm not saying that solely b/c I neglected to do physio strictly, that that's why my lungs are so bad. Either way, needing a tx was probably inevitable for me. But my point is, had i been complient, it could have delayed it a lot longer.

Just b/c your child doesn't look sick, or doesn't act it, or what not, the bottom line is, your child has a disease that needs to be treated and right now the only person who can do that for them, is you. I sincerely hope that for the sake of your child you begin doing them regularly. Silent damage is the worst kind there is.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[LouLou]

My parents were very proactive with my care dispite a similar situation to your daughter. In fact I was misdiagnosed 3x because I was "too healthy" looking. Evidently the doctors had never seen a chubby cf baby. My mom kept feeding me because she figured if I wanted it I needed it. After getting on a cf care routine at age 2.5 I never had a dip in my pfts until age 19 so I was never hospitalized. I did not start to cronically cough until I was 12. I believe you want at least this for your daughter. Do what you can to keep her in the best shape possible.

A few things to consider:
- The median age wouldn't have risen to 36.8 years old without the current medical breakthroughs.
- She can not become resistant to albuterol, pulmozyme or enzymes. These medicines can only benefit her and staave off cf symptoms.
- If she cultures PA, Tobi on 28 days and off 28 days, is a great method for keeping it at bay. If administered as prescribed she will not become resistant to it. Even if she does become resistant to Tobramycin it doesn't necessarily mean that Tobi isn't beneficial since Tobra goes through blood and Tobi goes into the lungs directly (more direct and powerful fighting PA)


Ok last but not least this is probably one of the most important points of my post:
- Developing good care habits and discipline now will make her lifetime engagement with cf care that much easier. Yes, I spend 3 hours a day on my cf care routine but it doesn't shape my life. I manage to do so much in great part because care of my cf has always been a part of my day.

Seriously, when she's a rebellious pre-teen is NOT the time to try to get her to buckle down and care for her cf.

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[jdprecious]

oh i am not saying that i never give her meds... really it has just been within the past 9 months while i was preggo and on bed rest that we have laxed.... she gets ALLLL 9 meds just not on a twice daily basis.... it is more like every other day since the baby has arrived... i just dont see that big of difference in her 9 months ago and today...

but i DO totally understand what you are saying about the silent damage... which is why i intend to find out what her lf% is and other little facts that everyone here seems to know about themselves or their cf'er... i also have to blame my clinic for a wee bit of my dissillusion bc up until a week ago i had never met another cf'er, heard of mrsa, picc lines or ports, clubbing and all the other intricacies of the disease.... she was diagnosed 2.5 yrs ago and since then it has been "hi jessica, how are your daughters coughs and poops?? ok here are some meds and we will see you back in 3 months, good day!" and that is pretty much how our clinic visits go...

so a week ago i went to a cf camp and met 30 other families that lived with the disease and since then i have found out that there is so much more than what i have been "told"... i have finally grieved over this disease the past week... when J was dx my dad had just died of pulmonary fibrosis and i was just so numb from his death and happy she didnt have cancer and i finally knew wth was goin on.. i never really cried or got upset over the dx... now that i have seen such horror stories i cant stop crying... i literally have sat here and read this board for almost 11 hours straight with no sleep... dh fell asleep with me reading and woke up to go to work and i was still reading... and of course crying...

so if you feel the need to bash, just know, this is a learning experience for me too!

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom

 

[fourkidsmom]

Jessica,

Welcome to the site, you will find it VERY imformative. I can understand what you are saying about not feeling the need to do the med's/treatments because she is doing so well. I have a 6 yr old son with cf, dx when I was 7 months pregnant. We have done 4 breathing treatments a day up till kindergarten and now we do 3. I know there are times when I think he is doing so well, why do these treatments, but you have to think of it as helping them down the road. My son has had several lung cleanouts and I have to say that this has probably been the longest time since not having one(knock on wood). It has been about 8 months. Not to be sad, but I look as it as I am going to do all I can or more and if his time comes sooner than what we want or expect at least I know I gave my 110%, I don't want to have any doubts. I know it is hard to fit everything in, I have 4 kids (2 with special needs), it seems like sometimes all I do is live to be a nurse around my house. It gets depressing, but you just need to keep going and keep your head up. Our kids are blessings and definately learning experiences.

You daughter looks GREAT! Hang in there and we are all here for you!

Fourkidsmom