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

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[jdprecious]

Hi all! I am new to these boards but not to CF. My 5 yr daughter, Jaelyn, has CF. My newborn daughter, Jamisyn, does not. I just wanted to introduce myself and say that I have been reading for about 6 hours nonstop! It is 7 am and I have not yet been to bed since I have found these forums. Now that I am here let me pick your brains please.

Jaelyn is your typical 5 year old. To look at her you would never know she is sick. She is as tall as an 8 yr old and weighs 60 lbs at 5.5 yrs old. Digestively speaking she suffers from constipation, tummy aches, and the occasional diarrhea. This is only every so often. She is ravenously hungry just about all the time (not sure if that is just her age though). Her cough and snotty nose were horrific when she was a newborn/toddler age. She was diagnosed at 3 yrs old with CF and she was PA+. Ever since then she has been just fine, hardly any CF symptoms except tasting salty and maybe a slight cold or two in the past 2.5 yrs.

Now, here is my question. Is it ok to give meds only *some* of the time???? Please do not bash but here is my thought process on this. For the past year or maybe year and a half I have been extremely lax on her treatments. Meaning I only administer them when she is sick or showing signs of CF symptoms. If she is coughing or has a runny nose, then we do the neb w. albuterol, pulmozyme, and tobi. If she isnt coughing or snotty, then we do not. Same with creon, if she is having tummy troubles then we take them. Otherwise, she is very heavy for her age and has amazing muscle tone. She takes gymnastics and ballet so she is not fat in any way, just thick i guess you could say. So, in my thinking, I do not want to innundate her little body with meds day in and day out until she is sick and really needs them to feel better. If she does get sick and need to be hospitalized what will these meds do for her then? I do not want to allow her system to grow accustomed or immune. So far, I do not know her stats on PFT's and her mutation info. I never knew to ask for that but I see most of you keep up with that info. I will ask on her next doc appt July 3rd.

Anyway, I do welcome the replies to my thoughts! Thanks and I look forward to chatting with you all in the future!!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[JazzysMom]

Welcome aboard! Lets get right to your questions. Although I know how easy it is to slack off when things "seem" fine.....you cant! CF is sneaky. Since we cant look inside to see the damage, we have to rely on outside signs. Being that often the outside signs are often minimal or non existant, we then must lean towards being proactive.

I wasnt dx until I was 7. We did treatments initially after dx, but it didnt last for long. I was able to get away with not doing them short term. WHat I mean is that I wasnt out of breath or less active from not doing them. I did go into the hospital occaisionally as a kid & I thought it was a "treat". Some independence from my parents LOL!

All through my life I was not compliant at home with meds. I thought that I was the one in charge & that CF didnt run my life. Then as I got older & I had my daughter & I got older some more.....I didnt bounce back like I use to. Now here I am with 33% lung function & unable to skip treatments without feeling the immediate impact.

Now granted I dont know how much of my lung function was lost just from getting older & progression alone, how much was from being a Mom and how much was from being non compliant over the years. What I DO know is that I cant get it back & I will always wonder if all those years of "freedom" from not doing treatments really took more of a toll then I will ever know. 1% here & there adds up & its the subtle decline that needs to be caught. The big gaps of decline or obvious.

In addition to the maintaining of lung function I also found that my non compliance as a kid made it very difficult to become compliant as an adult. IF a child doesnt know any different it makes it so much easier when they get older. I know its difficult at times and that you think you can get away with being lax, but PLEASE PLEASE PLEASE take it from me.........it does make a difference in the long term.

The negative impact any meds has on your childs body is minute compared to the damage CF can do........


HUGS!

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Ratatosk]

DS was diagnosed shortly after birth --- looks healthy, 50th percentile for height & weight, we're compliant with meds, CPT & nebs 3-4 times a day, vitamins, extra fat & salt, rarely coughs, was healthier than us this past winter; however, when we get his annual labs -- he's on the low end of normal for sodium and some of his vitamins. Xrays have always shown slight interstitial issues with his lower lobes, he's cultured H Flu, Pseudo, and more recently Steno Malt -- with no discernible symptoms... I shudder to think what he'd be like if we were more reactive in his care instead of proactive.

 

[Chaggie]

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.

 

[Chaggie]

Prevention is the key to our disease. The more you do now, the better chance he has latter on. Especially with inhalers and CPT. With Tobi, anly doing it when she is sick rather than as prescribed will typically result in resistance.

Even with enzymes, she may not have alot problems, but they will help keep away those stomach aches, constipation and diarhea.