I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
aggressive preventative treatment in a one month old
- Thread starter nicole781
- Start date
I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
I take alexa back to the cf clinic in about 2 weeks, and i was wondering, for those of you who knew about the diagnosis from the beginning, what is the most aggressive preventative treatments for a baby this young? I know CPT, but what else should I be bringing up to the doctor? I want to get into a routine from the start with her, and I want as much prevention as possible, but I'm not sure what to bring up to the doctor, nebs, medicines...etc.........any suggestions?
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
First of all, congratulations on your new baby girl! My daughter was diagnosed at one month and my son while I will still pregnant with him. My son started pulmozyme as a preventative med when he was a month old. Pulmozyme is an inhaled drug. My kids also are now on magnesium and a probotic. Not sure when is the best age to start those. Also, lots of kids are on prevacid or other acid neutralizing drugs to help with digestion. I guess the best thing is to make sure her weight is stable. It can be challenging at first to get the dosage of enzymes right since you have to go up as she gets bigger. My best advice would be to let her start feeding herself some finger foods around seven months old. It can be hard to get kids with cf to eat well. I think part of the reason is us parents are so stressed with getting enough food down that we try and control the meal at a time when kids need to learn how to do it themselves. I learned that from trying to get my daughter to eat more as a baby. Basically, you can't get a child to eat more or what they don't like to eat. Dieticians will often tell us parents to feed our kids this and that and they need X many calories per day. Well, if a kid doesn't like milk with cream for example - there is nothing we can do about it. A great book for you to read is Child of Mine by Ellyn Satter. You can get it on amazon. It really helped me learn how to get my son to feed himself well and enjoy eating. One other word of advice - you know your baby the best and drs don't know everything. If you ever think something is wrong with your baby don't let a dr dismiss your concerns. Actually you are on the right track by asking about what you need to know for the next appt! Keep up the good work and enjoy your precious baby!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
M
Mommafirst
Guest
What a good question, Nicole. My daughter wasn't diagnosed until almost 5 months old. We started CPT before our next clinic appointment. We didn't add nebs until her first respiratory problem. I've asked about pulmozyme, but they don't want her on it until at least two years old, unless she develops more mucous. Right now her mucous production is atypical for a CFer and until she has more mucous they feel that the side effects of pulmozyme are not a good idea. I'd imagine we'll start after her second birthday.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
I would agree with Sharon, that at this age the most important thing would be to keep an eye on her nutrition and make sure her enzymes are doing well and her weight stays steady.
I'd also think keeping an eye on what she cultures will be helpful as well, though throat cultures and sinus washes don't really give a clear picture of what they might have in their lungs, necessarily.
Let us know how your first clinic goes. It can be sooo overwhelming. It was for me.
My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck
My daughter had MI at birth so we knew right away. We came home from the hospital when she was 2 weeks old. From then on we were doing pulmozyne, albuterol, and intal all in the neb along with cpt. I think the only other meds she was on at that point was enzymes and adek vitamins. That is what worked for us and we added other meds as she needed them, like for reflux. Hope this helped. Good Luck