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

[Emily65Roses]

I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

I'm just going to echo everyone else, basically. CF care = prevention. After lung damage is done, you can't go back and fix it. So while she's healthy, you want to keep her healthy. And keeping her healthy = doing her meds. Everyone skips sometimes. When I was a kid, we'd take 6 Pulmozymes on vacation, and I'd get one night off, whichever night I chose. But skipping every other day is something I'd advise against.

It's hard to get in the CF swing of things and do all the preventative crap when you're "so healthy!" but that's really when you need to do it. All the adult CFers that are not doing well now, or that have been transplanted, or that have died... have done so because meds and nebs and stuff weren't around when we were kids. I didn't start nebs until I was 9, because that's when Pulmozyme came out. I would've loved to have had Pulmozyme from the time I was a very young child. Jaelyn has the opportunity to have a really good head start. Give it to her. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[lightNlife]

Although I can appreciate where you're coming from, I have to agree with others that it's not a good idea to withhold meds. The reason being, that a lot of the meds we take as CFers work best when they are given regularly.

I used to be noncompliant, and I'd only do my meds when I felt like it, or take an inhaler when I was starting to feel bad. As I've matured, I learned that I was really hurting my body by doing that. I was forcing it to "coast" on "good enough" when I could have been easily helping myself by always taking my meds. Sometimes the pain and frustration (not to mention the TIME CONSUMING) of dealing with an infection or other complication can be avoided by always taking the meds. ALWAYS.

CF is not one of those diseases that only experiences "flare ups" that require attention. CF is chronic, so it ALWAYS requires medically necessary things to keep us functioning. This is not an optional thing.

I know you weren't trying to hurt your daughter, but I sincerely hope that in the future you will think of her future and keep the bigger picture in mind. The time investment of doing things properly know has potentially huge pay-offs in terms of longevity and well-being.

When your daughter is older and responsible for her own care, she'll probabably make the same mistakes you have of only treating things when she feels like it. It's your job to teach her to be diligent. You need to model compliant behavior so that she is able to make good decisions for herself later.

CF is serious business. It should be treated as such. Fight on, fight hard. You have the tools to do so.

Best wishes,
Lauren

<a target=_blank class=ftalternatingbarlinklarge href="http://livingwellwithCF.blogspot.com">http://livingwellwithCF.blogspot.com</a>

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[Ratatosk]

It's easier to get into a routine when they're young. With DS, we hit the ground running with CPT/Nebs/Meds when he was a week old. And while I wished he hadn't been diagnosed right away, so we could just ENJOY our new baby, I realize it was for the best. My friend's granddaughter wasn't diagnosed until she was 1 1/2 years old and CPT was horrible -- she'd scream and cry the entire time. DS, would fall asleep while we beat him.

I just had a moment today of "oh, crap, not another med" when I went to pick up DS's septra for his steno. Just seems like one more thing... But it's for the best -- we want him to stay healthy, and keeping in a routine is one way I feel I have some semblance of control of things.

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done

 

[robert321]

in your attempts to avoid making her resistant to meds is working in reverse. When you only do parts of meds, for example tobi for only about a week or two, you don't kill all the bacteria and just like you only get chicken pox once, it develops a resistance to tobi and that is one of the best meds we have so accidentally making her resistant to it can really hurt her, i know you don't want to do that and you only have your daughter in your best interest but especially with antibiotics make sure you do all of them the way the dr said to. Ultamately the drs also have your daughters best interest at heart and will do to their best ability to keep her healthy and they need your help to make sure it gets done