daughter with newly diagnosed CF
- Thread starter mistylavon
- Start date
Misty, I just re-read what you typed about the junk food -- you didn't want them in the house because it was hard for you to not eat them 
hahahaha, yes that is true! I am tempted by the half and half & ice cream around here all the time! Don't know if it would help, but you can look at that food like prescription medication for your daughter... it's not yours maybe that would help.
hahahaha, yes that is true! I am tempted by the half and half & ice cream around here all the time! Don't know if it would help, but you can look at that food like prescription medication for your daughter... it's not yours maybe that would help.Misty, I just re-read what you typed about the junk food -- you didn't want them in the house because it was hard for you to not eat them hahahaha, yes that is true! I am tempted by the half and half & ice cream around here all the time! Don't know if it would help, but you can look at that food like prescription medication for your daughter... it's not yours maybe that would help.
hahahaha, yes that is true! I am tempted by the half and half & ice cream around here all the time! Don't know if it would help, but you can look at that food like prescription medication for your daughter... it's not yours maybe that would help.Hi Misty,
Welcome! people with Cf have trouble absorbing fat and getting enough calories. I think that 's the message being said by the doc. There are good fats and bad fats. I try to focus on the good fats for my daughter who is 3 with CF but she does get some of those bad fats and that's ok too. Good fats: olive oil, flax seed oil, nuts, fish oil are great for CF'ers. My daughter eats lots of protein/fatty foods like red meat, (we're having beef stew tonight), whole milk(although i breastfed her for a LONG time), chicken with skin on, fish with olive oil. She loves mac and cheese with whole milk and butter. Some kids like avacado. She loves tortilla chips. Anyway , you can squeeze in some extra calories is great. Peanut butter(teddy) is good too. I started giving my daughter Boost Plus( a nutritional drink) but I think she's tried of that already. Some kids like to dip their veggies/fruit in peanut butter or a rich dip. I think it's wise to try to "beef up" your child with Cf in case they get sick so they have a little extra paddibng when they don't want to eat.
It is hard not to finish what you're CF child doesn't eat. if I ate exactly what my daughter ate I'ld gain weight like crazy. I don't usually cook separate for her but just add extra butter/ olive oil to her meal. She drinks whole milk we drink skim. It's a big balancing act. Please do ask more questions cause I'm sure lots of parents will have great practical ideas.
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
Welcome! people with Cf have trouble absorbing fat and getting enough calories. I think that 's the message being said by the doc. There are good fats and bad fats. I try to focus on the good fats for my daughter who is 3 with CF but she does get some of those bad fats and that's ok too. Good fats: olive oil, flax seed oil, nuts, fish oil are great for CF'ers. My daughter eats lots of protein/fatty foods like red meat, (we're having beef stew tonight), whole milk(although i breastfed her for a LONG time), chicken with skin on, fish with olive oil. She loves mac and cheese with whole milk and butter. Some kids like avacado. She loves tortilla chips. Anyway , you can squeeze in some extra calories is great. Peanut butter(teddy) is good too. I started giving my daughter Boost Plus( a nutritional drink) but I think she's tried of that already. Some kids like to dip their veggies/fruit in peanut butter or a rich dip. I think it's wise to try to "beef up" your child with Cf in case they get sick so they have a little extra paddibng when they don't want to eat.
It is hard not to finish what you're CF child doesn't eat. if I ate exactly what my daughter ate I'ld gain weight like crazy. I don't usually cook separate for her but just add extra butter/ olive oil to her meal. She drinks whole milk we drink skim. It's a big balancing act. Please do ask more questions cause I'm sure lots of parents will have great practical ideas.
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
Hi Misty,
Welcome! people with Cf have trouble absorbing fat and getting enough calories. I think that 's the message being said by the doc. There are good fats and bad fats. I try to focus on the good fats for my daughter who is 3 with CF but she does get some of those bad fats and that's ok too. Good fats: olive oil, flax seed oil, nuts, fish oil are great for CF'ers. My daughter eats lots of protein/fatty foods like red meat, (we're having beef stew tonight), whole milk(although i breastfed her for a LONG time), chicken with skin on, fish with olive oil. She loves mac and cheese with whole milk and butter. Some kids like avacado. She loves tortilla chips. Anyway , you can squeeze in some extra calories is great. Peanut butter(teddy) is good too. I started giving my daughter Boost Plus( a nutritional drink) but I think she's tried of that already. Some kids like to dip their veggies/fruit in peanut butter or a rich dip. I think it's wise to try to "beef up" your child with Cf in case they get sick so they have a little extra paddibng when they don't want to eat.
It is hard not to finish what you're CF child doesn't eat. if I ate exactly what my daughter ate I'ld gain weight like crazy. I don't usually cook separate for her but just add extra butter/ olive oil to her meal. She drinks whole milk we drink skim. It's a big balancing act. Please do ask more questions cause I'm sure lots of parents will have great practical ideas.
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
Welcome! people with Cf have trouble absorbing fat and getting enough calories. I think that 's the message being said by the doc. There are good fats and bad fats. I try to focus on the good fats for my daughter who is 3 with CF but she does get some of those bad fats and that's ok too. Good fats: olive oil, flax seed oil, nuts, fish oil are great for CF'ers. My daughter eats lots of protein/fatty foods like red meat, (we're having beef stew tonight), whole milk(although i breastfed her for a LONG time), chicken with skin on, fish with olive oil. She loves mac and cheese with whole milk and butter. Some kids like avacado. She loves tortilla chips. Anyway , you can squeeze in some extra calories is great. Peanut butter(teddy) is good too. I started giving my daughter Boost Plus( a nutritional drink) but I think she's tried of that already. Some kids like to dip their veggies/fruit in peanut butter or a rich dip. I think it's wise to try to "beef up" your child with Cf in case they get sick so they have a little extra paddibng when they don't want to eat.
It is hard not to finish what you're CF child doesn't eat. if I ate exactly what my daughter ate I'ld gain weight like crazy. I don't usually cook separate for her but just add extra butter/ olive oil to her meal. She drinks whole milk we drink skim. It's a big balancing act. Please do ask more questions cause I'm sure lots of parents will have great practical ideas.
Rebecca(mom to Sammy 7 no CF and MAggie 3 with CF)
mistylavon
New member
Wow! What a supportive group you all are. Thank you all so much for the quick replys. I did read the nutrition pages for toddlers from the ccf.org website. All of this information here has really helped.
Melissa - I see that you were diagnosed at 7 and are now 37, do you still do all the daily breathing treatments and taking enzymes? Have you had a pretty easy or hard time most of your life? I hope these questions are ok to ask you.
Alyssa - LOL! I don't know that I can think of oreo's as prescription medication! We've lived in Alaska for about 7 years and went to Arizona b/c Morgan was having GI problems and was told here she had a stricture in her bowel and thought we would be having surgery there. It's TOO HOT in Arizona. We're originally from Oklahoma.
I feel relieved with all these answers. I went out and bought some junk food yesterday. I really want to avoid cooking seperately for her and having all this junk in my house. Some is ok, but not all the time. I can just add butter and milk to what I can. Neither one of my girls and big on veggies but I'm going to try melting cheese on some. I try and work out 6 days a week and try and eat pretty clean.
What kind of experiences has everyone had w/ their childrens's health? Do they spend much time being/feeling sick? Much time in the hopsital? I'm just kinda wondering what I have to look at in my future, although I know everyone is different.
I'm sorry I'm not responding to each and everyone of you individually. This is the first and only board I've joined and really feel alot of relief already by being able to talk to parents that are feeling and experiencing what I am.
Do any of you work or do you all stay home w/ your kids? I started a part-time job in October just to get out of the house, I work as an in-court clerk for a federal magistrate judge, which I really love. We're going to wait and talk to the doc when we go in March and see what his suggestion is. If you stay home now and didn't before, what did your doc recommend about taking children to home daycares. I'll quit if I need to and stay home w/ my girls.
Thanks!
Misty
Melissa - I see that you were diagnosed at 7 and are now 37, do you still do all the daily breathing treatments and taking enzymes? Have you had a pretty easy or hard time most of your life? I hope these questions are ok to ask you.
Alyssa - LOL! I don't know that I can think of oreo's as prescription medication! We've lived in Alaska for about 7 years and went to Arizona b/c Morgan was having GI problems and was told here she had a stricture in her bowel and thought we would be having surgery there. It's TOO HOT in Arizona. We're originally from Oklahoma.
I feel relieved with all these answers. I went out and bought some junk food yesterday. I really want to avoid cooking seperately for her and having all this junk in my house. Some is ok, but not all the time. I can just add butter and milk to what I can. Neither one of my girls and big on veggies but I'm going to try melting cheese on some. I try and work out 6 days a week and try and eat pretty clean.
What kind of experiences has everyone had w/ their childrens's health? Do they spend much time being/feeling sick? Much time in the hopsital? I'm just kinda wondering what I have to look at in my future, although I know everyone is different.
I'm sorry I'm not responding to each and everyone of you individually. This is the first and only board I've joined and really feel alot of relief already by being able to talk to parents that are feeling and experiencing what I am.
Do any of you work or do you all stay home w/ your kids? I started a part-time job in October just to get out of the house, I work as an in-court clerk for a federal magistrate judge, which I really love. We're going to wait and talk to the doc when we go in March and see what his suggestion is. If you stay home now and didn't before, what did your doc recommend about taking children to home daycares. I'll quit if I need to and stay home w/ my girls.
Thanks!
Misty
mistylavon
New member
Wow! What a supportive group you all are. Thank you all so much for the quick replys. I did read the nutrition pages for toddlers from the ccf.org website. All of this information here has really helped.
Melissa - I see that you were diagnosed at 7 and are now 37, do you still do all the daily breathing treatments and taking enzymes? Have you had a pretty easy or hard time most of your life? I hope these questions are ok to ask you.
Alyssa - LOL! I don't know that I can think of oreo's as prescription medication! We've lived in Alaska for about 7 years and went to Arizona b/c Morgan was having GI problems and was told here she had a stricture in her bowel and thought we would be having surgery there. It's TOO HOT in Arizona. We're originally from Oklahoma.
I feel relieved with all these answers. I went out and bought some junk food yesterday. I really want to avoid cooking seperately for her and having all this junk in my house. Some is ok, but not all the time. I can just add butter and milk to what I can. Neither one of my girls and big on veggies but I'm going to try melting cheese on some. I try and work out 6 days a week and try and eat pretty clean.
What kind of experiences has everyone had w/ their childrens's health? Do they spend much time being/feeling sick? Much time in the hopsital? I'm just kinda wondering what I have to look at in my future, although I know everyone is different.
I'm sorry I'm not responding to each and everyone of you individually. This is the first and only board I've joined and really feel alot of relief already by being able to talk to parents that are feeling and experiencing what I am.
Do any of you work or do you all stay home w/ your kids? I started a part-time job in October just to get out of the house, I work as an in-court clerk for a federal magistrate judge, which I really love. We're going to wait and talk to the doc when we go in March and see what his suggestion is. If you stay home now and didn't before, what did your doc recommend about taking children to home daycares. I'll quit if I need to and stay home w/ my girls.
Thanks!
Misty
Melissa - I see that you were diagnosed at 7 and are now 37, do you still do all the daily breathing treatments and taking enzymes? Have you had a pretty easy or hard time most of your life? I hope these questions are ok to ask you.
Alyssa - LOL! I don't know that I can think of oreo's as prescription medication! We've lived in Alaska for about 7 years and went to Arizona b/c Morgan was having GI problems and was told here she had a stricture in her bowel and thought we would be having surgery there. It's TOO HOT in Arizona. We're originally from Oklahoma.
I feel relieved with all these answers. I went out and bought some junk food yesterday. I really want to avoid cooking seperately for her and having all this junk in my house. Some is ok, but not all the time. I can just add butter and milk to what I can. Neither one of my girls and big on veggies but I'm going to try melting cheese on some. I try and work out 6 days a week and try and eat pretty clean.
What kind of experiences has everyone had w/ their childrens's health? Do they spend much time being/feeling sick? Much time in the hopsital? I'm just kinda wondering what I have to look at in my future, although I know everyone is different.
I'm sorry I'm not responding to each and everyone of you individually. This is the first and only board I've joined and really feel alot of relief already by being able to talk to parents that are feeling and experiencing what I am.
Do any of you work or do you all stay home w/ your kids? I started a part-time job in October just to get out of the house, I work as an in-court clerk for a federal magistrate judge, which I really love. We're going to wait and talk to the doc when we go in March and see what his suggestion is. If you stay home now and didn't before, what did your doc recommend about taking children to home daycares. I'll quit if I need to and stay home w/ my girls.
Thanks!
Misty
DH and I both work full time. DS goes to a daycare center. One doctor threw a total fit and thought I should stay at home or get a nanny. I love my child, but I can't stay home with him full time. He's too busy. Plus he needs socialization, needs to play with other kids. Plus they have preschool -- if he was home with me I'd probably have him propped up in front of the tv watching cartoons.
A friend of mine has a nanny and her kids (non-cfers) are ALWAYS sick. A coworker of mine complains her newborn granddaughter goes to a home daycare -- kids of all ages infant thru school age and the other kids are always touching her, wanting to hold her, help feed her, change her, "sneeze & cough all over her".
With the daycare center, there may be a large number of children being cared for on the premises, but when DS started there at age 3 months -- he was confined to the baby room along with 5 other infants under the age of 1. Then he was put in a room with 1-2 year olds. He's been with the 2-3 year olds lately. If another kid gets sick with something -- they let us know. Liza
A friend of mine has a nanny and her kids (non-cfers) are ALWAYS sick. A coworker of mine complains her newborn granddaughter goes to a home daycare -- kids of all ages infant thru school age and the other kids are always touching her, wanting to hold her, help feed her, change her, "sneeze & cough all over her".
With the daycare center, there may be a large number of children being cared for on the premises, but when DS started there at age 3 months -- he was confined to the baby room along with 5 other infants under the age of 1. Then he was put in a room with 1-2 year olds. He's been with the 2-3 year olds lately. If another kid gets sick with something -- they let us know. Liza
DH and I both work full time. DS goes to a daycare center. One doctor threw a total fit and thought I should stay at home or get a nanny. I love my child, but I can't stay home with him full time. He's too busy. Plus he needs socialization, needs to play with other kids. Plus they have preschool -- if he was home with me I'd probably have him propped up in front of the tv watching cartoons.
A friend of mine has a nanny and her kids (non-cfers) are ALWAYS sick. A coworker of mine complains her newborn granddaughter goes to a home daycare -- kids of all ages infant thru school age and the other kids are always touching her, wanting to hold her, help feed her, change her, "sneeze & cough all over her".
With the daycare center, there may be a large number of children being cared for on the premises, but when DS started there at age 3 months -- he was confined to the baby room along with 5 other infants under the age of 1. Then he was put in a room with 1-2 year olds. He's been with the 2-3 year olds lately. If another kid gets sick with something -- they let us know. Liza
A friend of mine has a nanny and her kids (non-cfers) are ALWAYS sick. A coworker of mine complains her newborn granddaughter goes to a home daycare -- kids of all ages infant thru school age and the other kids are always touching her, wanting to hold her, help feed her, change her, "sneeze & cough all over her".
With the daycare center, there may be a large number of children being cared for on the premises, but when DS started there at age 3 months -- he was confined to the baby room along with 5 other infants under the age of 1. Then he was put in a room with 1-2 year olds. He's been with the 2-3 year olds lately. If another kid gets sick with something -- they let us know. Liza
mistylavon
New member
So, if the daycare let's you know another kid is sick with something, do you have to call in and miss work or how do you handle that?
mistylavon
New member
So, if the daycare let's you know another kid is sick with something, do you have to call in and miss work or how do you handle that?
They don't allow sick kids -- fever, etc. to stay. They have to go home. Lot of times it's just a warning. If we were really really nervous about something, we'd probably keep him home, but there hasn't been anything too scary. Despite DS's cf, he's still going to catch a cold from time to time, just have to be vigilant.
DS has had his chicken pox vaccine -- all the kids have to be vaccinated to go to daycare. But a child in another room, got chicken pox anyway.
Stomach flu/the runs was going around. Everyone was warned that any child with loose stools, upset stomach was going to be sent home. Usually they spend the night disinfecting the place.
A couple years ago when whooping cough/pertussis hit our state pretty bad. An older child got it, so the director had to call all the parents and all children and staff were put on zithromax. I called my doctor at 10:30 at night and had a script waiting for me at the pharmacy -- other parents had to wait all day for a call from their doctor's office and had to stay home or make other arrangments. liza
If DS has a fever, either DH or I stay home with him or take him to the doctor. Last time he had an ear infection, I took him to the clinic and then my in-laws watched him the rest of the day.
DS has had his chicken pox vaccine -- all the kids have to be vaccinated to go to daycare. But a child in another room, got chicken pox anyway.
Stomach flu/the runs was going around. Everyone was warned that any child with loose stools, upset stomach was going to be sent home. Usually they spend the night disinfecting the place.
A couple years ago when whooping cough/pertussis hit our state pretty bad. An older child got it, so the director had to call all the parents and all children and staff were put on zithromax. I called my doctor at 10:30 at night and had a script waiting for me at the pharmacy -- other parents had to wait all day for a call from their doctor's office and had to stay home or make other arrangments. liza
If DS has a fever, either DH or I stay home with him or take him to the doctor. Last time he had an ear infection, I took him to the clinic and then my in-laws watched him the rest of the day.
They don't allow sick kids -- fever, etc. to stay. They have to go home. Lot of times it's just a warning. If we were really really nervous about something, we'd probably keep him home, but there hasn't been anything too scary. Despite DS's cf, he's still going to catch a cold from time to time, just have to be vigilant.
DS has had his chicken pox vaccine -- all the kids have to be vaccinated to go to daycare. But a child in another room, got chicken pox anyway.
Stomach flu/the runs was going around. Everyone was warned that any child with loose stools, upset stomach was going to be sent home. Usually they spend the night disinfecting the place.
A couple years ago when whooping cough/pertussis hit our state pretty bad. An older child got it, so the director had to call all the parents and all children and staff were put on zithromax. I called my doctor at 10:30 at night and had a script waiting for me at the pharmacy -- other parents had to wait all day for a call from their doctor's office and had to stay home or make other arrangments. liza
If DS has a fever, either DH or I stay home with him or take him to the doctor. Last time he had an ear infection, I took him to the clinic and then my in-laws watched him the rest of the day.
DS has had his chicken pox vaccine -- all the kids have to be vaccinated to go to daycare. But a child in another room, got chicken pox anyway.
Stomach flu/the runs was going around. Everyone was warned that any child with loose stools, upset stomach was going to be sent home. Usually they spend the night disinfecting the place.
A couple years ago when whooping cough/pertussis hit our state pretty bad. An older child got it, so the director had to call all the parents and all children and staff were put on zithromax. I called my doctor at 10:30 at night and had a script waiting for me at the pharmacy -- other parents had to wait all day for a call from their doctor's office and had to stay home or make other arrangments. liza
If DS has a fever, either DH or I stay home with him or take him to the doctor. Last time he had an ear infection, I took him to the clinic and then my in-laws watched him the rest of the day.
Hi Misty,
My husband and I both work full time. I'm a teacher so I have lots of time to be with my kids. They are in the same school system so we have the same vacations, snow days etc. Its also been a great help when my kids are sick, I can check with teachers and bring home work. When my son was first diagnosed, I thought I shouls stay home and care for him, but having me work is better for us all. If I was home I would obsess about their health. Now we all get a break- its healthier.
My husband and I both work full time. I'm a teacher so I have lots of time to be with my kids. They are in the same school system so we have the same vacations, snow days etc. Its also been a great help when my kids are sick, I can check with teachers and bring home work. When my son was first diagnosed, I thought I shouls stay home and care for him, but having me work is better for us all. If I was home I would obsess about their health. Now we all get a break- its healthier.
Hi Misty,
My husband and I both work full time. I'm a teacher so I have lots of time to be with my kids. They are in the same school system so we have the same vacations, snow days etc. Its also been a great help when my kids are sick, I can check with teachers and bring home work. When my son was first diagnosed, I thought I shouls stay home and care for him, but having me work is better for us all. If I was home I would obsess about their health. Now we all get a break- its healthier.
My husband and I both work full time. I'm a teacher so I have lots of time to be with my kids. They are in the same school system so we have the same vacations, snow days etc. Its also been a great help when my kids are sick, I can check with teachers and bring home work. When my son was first diagnosed, I thought I shouls stay home and care for him, but having me work is better for us all. If I was home I would obsess about their health. Now we all get a break- its healthier.