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

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[janddburke]

my Jess is also relatively symptom free most of the time but we ALWAYS do at least 1 PT a day. (30-40 minutes)
when she gets a runny nose or even a slight cough we go right to 3 or 4.

enzymes are a different story.
when she was about 5 we started getting lax. and it made no difference. so we discussed it with the doctor and began to taper off and what do you know? she didn't need them. I didn't even know at the time that some CFers were pancreatic sufficient.

but one bout with MRSA and hospitalizations, IVs, PICC lines will make you a believer.

EVERY DAY, without fail, all her meds.

it becomes routine, we don't even think about it anymore.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[amysmom]

I think one of the most important things you can do for your daughter is to get on a daily schedule of doing meds and aerosol treatments.


The sooner your daughter incorporates all of it into her daily life the healthier she'll be and it will be so much easier as she gets older and has more symptoms (which will happen).


The biggest part of fighting this whole disease is the constant daily care. As a mom, I think it's in the same category as teaching a child to brush their teeth and bathe - it has to be done no matter what, even if you hate it, even if you're tired.


Our daughter is 26 now and showing more CF symptoms. Up until college age, she rarely showed any. But when she was diagnosed at 6 months, I rearranged everything so that all the CF stuff fit easily into our daily schedule. We never missed any treatments.


That wasn't always fun or easy but it has paid off in a big way. Amy never misses medication or a treatment and she's extremely healthy because of it. Now it's a part of her day that she doesn't even think about.


I can only imagine how hard this must be, especially with a second baby, but it's our job as mothers and I think the regrets (which we all have anyway!) are so awful it's not worth it.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[Rebjane]

Welcome,

I have a 4 1/2 year old daughter with CF and an almost 8 year old son without CF. My daughter was diagnosed when I was pregnant by genetic testing, and we started treatments very early while she was a newborn. She's had alot of abdominal troubles needing 2 surgeries before 6 months of age and she's had a PICC line once for IV's. We try to be very proactive with her treatments, she does lots of nebs every day and her VEST 3 times a day 20 min a time(when she's well) It's ALOT. Some clinics like to "spoonfeed" info to the parents. Our clinic tried to do that at the beginning, probably to not overwhelm me but I told them I felt better if they gave as much information as they had and some because I feel better when I know ALL the info. It may be hard to deal with but oh well. When my daughter is well, I always try to "beef" her up. We try to do lots of high fat(as much healthy fats as we can) foods, FUN exersize, like swimming, hiking, playing on the jungle gym, or just jumping up and down on my bed is great for CF'ers.

 

[NoExcuses]

Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.

 

[NoExcuses]

Jessica you'll find that almost every single person on this board gets info here that they don't get from their clinic.

This is why this board is so popular.

It's easy to blame the clinic but it's really up to us to do as much research and collect as much information as possible to keep us healthy.