I'm a scared momma today

[Mommafirst]

After three weeks and two courses of antibiotics, my 9 month old is still coughing. The CF Nurse said that at her age they want NO cough. So we are going in today and they will assess if she needs IV antibiotics. I am so scared here. I feel like crying foul here, we were supposed to be assymptomatic -- silly I suppose. But considering her mutations and their history, they spent a lot of time assuring us that the odds were good that she will have a very mild case. But it seems to me that a hospitalization this young cannot be a good sign.

For other moms/parents out there that breastfed their CF babies... was baby PI from the start or only once you weaned? My daughter is pancreatic sufficient, but I'm so afraid that once I wean she will become insufficient, as I read that there may be enzymes in breast milk that function like the enzymes PI CFers take.

 

[Mommafirst]

After three weeks and two courses of antibiotics, my 9 month old is still coughing. The CF Nurse said that at her age they want NO cough. So we are going in today and they will assess if she needs IV antibiotics. I am so scared here. I feel like crying foul here, we were supposed to be assymptomatic -- silly I suppose. But considering her mutations and their history, they spent a lot of time assuring us that the odds were good that she will have a very mild case. But it seems to me that a hospitalization this young cannot be a good sign.

For other moms/parents out there that breastfed their CF babies... was baby PI from the start or only once you weaned? My daughter is pancreatic sufficient, but I'm so afraid that once I wean she will become insufficient, as I read that there may be enzymes in breast milk that function like the enzymes PI CFers take.

 

[Mommafirst]

After three weeks and two courses of antibiotics, my 9 month old is still coughing. The CF Nurse said that at her age they want NO cough. So we are going in today and they will assess if she needs IV antibiotics. I am so scared here. I feel like crying foul here, we were supposed to be assymptomatic -- silly I suppose. But considering her mutations and their history, they spent a lot of time assuring us that the odds were good that she will have a very mild case. But it seems to me that a hospitalization this young cannot be a good sign.

For other moms/parents out there that breastfed their CF babies... was baby PI from the start or only once you weaned? My daughter is pancreatic sufficient, but I'm so afraid that once I wean she will become insufficient, as I read that there may be enzymes in breast milk that function like the enzymes PI CFers take.

 

[angelsmom]

Heather -
I don't know the answers to your questions but just wanted to say I hope your sweet baby girl does not have to be hospitalized.
My daughter wcf has not been hospitalized and I am so scared of having to face that one day too, so I can understand somewhat what you must be feeling.
Hope you have time to post an update after her appointment today.

Sandra
mom to Sara, 2.5 wcf

 

[angelsmom]

Heather -
I don't know the answers to your questions but just wanted to say I hope your sweet baby girl does not have to be hospitalized.
My daughter wcf has not been hospitalized and I am so scared of having to face that one day too, so I can understand somewhat what you must be feeling.
Hope you have time to post an update after her appointment today.

Sandra
mom to Sara, 2.5 wcf

 

[angelsmom]

Heather -
I don't know the answers to your questions but just wanted to say I hope your sweet baby girl does not have to be hospitalized.
My daughter wcf has not been hospitalized and I am so scared of having to face that one day too, so I can understand somewhat what you must be feeling.
Hope you have time to post an update after her appointment today.

Sandra
mom to Sara, 2.5 wcf

 

[LouLou]

Hey Heather, I just wanted to shed some somewhat positive thinking on your situation. I was hospitalized a few times before I was 2. I feel that while my lungs were still developing infections hit me a bit harder. From 2 - 21 I wasn't on IVs because my cf was controlable through pt, oral and nebulized meds. In fact I did not start to see a decline in my numbers until high school and even then it was what could be considered normal for a non cfer (but I've always been an athlete). She's still developing her immune system at this point and colds like this will make her stronger for her years to come. I would suggest you not snowball your thinking about negative things but rather be her advicate in positivity about the cold. I am 100% sure that positive thinking has an effect on health outcome. A round of IVs is a God send. It will lick that cold clean and she'll be very strong again. Just remember that all babies can get pneumonia and RSV - it doesn't mean she's weak and it definitely doesn't tell you anything about her future so get it out of your head. Maybe it would help to think about how great it is that she has so many antibiotic options. What anti was she on at home? It's great you have a proactive CF team. Imagine the flip side....you having to say "Alyssa WILL have no cough. I want action people!!!" and them looking at you like a deer in headlights.

Is your daughter on any solids at all? You'll probably see a problem soon after starting some solids with the breast milk if she is PI.

 

[LouLou]

Hey Heather, I just wanted to shed some somewhat positive thinking on your situation. I was hospitalized a few times before I was 2. I feel that while my lungs were still developing infections hit me a bit harder. From 2 - 21 I wasn't on IVs because my cf was controlable through pt, oral and nebulized meds. In fact I did not start to see a decline in my numbers until high school and even then it was what could be considered normal for a non cfer (but I've always been an athlete). She's still developing her immune system at this point and colds like this will make her stronger for her years to come. I would suggest you not snowball your thinking about negative things but rather be her advicate in positivity about the cold. I am 100% sure that positive thinking has an effect on health outcome. A round of IVs is a God send. It will lick that cold clean and she'll be very strong again. Just remember that all babies can get pneumonia and RSV - it doesn't mean she's weak and it definitely doesn't tell you anything about her future so get it out of your head. Maybe it would help to think about how great it is that she has so many antibiotic options. What anti was she on at home? It's great you have a proactive CF team. Imagine the flip side....you having to say "Alyssa WILL have no cough. I want action people!!!" and them looking at you like a deer in headlights.

Is your daughter on any solids at all? You'll probably see a problem soon after starting some solids with the breast milk if she is PI.

 

[LouLou]

Hey Heather, I just wanted to shed some somewhat positive thinking on your situation. I was hospitalized a few times before I was 2. I feel that while my lungs were still developing infections hit me a bit harder. From 2 - 21 I wasn't on IVs because my cf was controlable through pt, oral and nebulized meds. In fact I did not start to see a decline in my numbers until high school and even then it was what could be considered normal for a non cfer (but I've always been an athlete). She's still developing her immune system at this point and colds like this will make her stronger for her years to come. I would suggest you not snowball your thinking about negative things but rather be her advicate in positivity about the cold. I am 100% sure that positive thinking has an effect on health outcome. A round of IVs is a God send. It will lick that cold clean and she'll be very strong again. Just remember that all babies can get pneumonia and RSV - it doesn't mean she's weak and it definitely doesn't tell you anything about her future so get it out of your head. Maybe it would help to think about how great it is that she has so many antibiotic options. What anti was she on at home? It's great you have a proactive CF team. Imagine the flip side....you having to say "Alyssa WILL have no cough. I want action people!!!" and them looking at you like a deer in headlights.

Is your daughter on any solids at all? You'll probably see a problem soon after starting some solids with the breast milk if she is PI.

 

[NoExcuses]

Few comments


1. I think it's horrible that your doctor is telling you hold mild/moderate/severe your child will be. CF is so difficult to predict and to set expectations like that is awful. This is a great case in point. You were told your child is mild and now she may need to be hospitalized which goes against the expectations your doc set. That is bad medicine, in my opinion

2. I was hospitalized at aournd 7 months myself. It's not the end of the world. I'm 25 now and my FEV1's are 95% (lung function is considered to be the same as someone without CF). Being proactive when a problem does arise and catching an infection soon will only lead to better lung function in the future. So have hope! Hospitalization now is not a prediction by any means of things to come!!!

3. Being pacreatic sufficient or insufficient isn't a sign of life expectacy either. I know plenty of CFers who don't need digestive enzymes, but their lungs are in awful shape. And I know CFers with good lungs who happen to need to pop a few enzymes every time they eat.

Hang in there <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're doing the right thing by being proactive!

 

[NoExcuses]

Few comments


1. I think it's horrible that your doctor is telling you hold mild/moderate/severe your child will be. CF is so difficult to predict and to set expectations like that is awful. This is a great case in point. You were told your child is mild and now she may need to be hospitalized which goes against the expectations your doc set. That is bad medicine, in my opinion

2. I was hospitalized at aournd 7 months myself. It's not the end of the world. I'm 25 now and my FEV1's are 95% (lung function is considered to be the same as someone without CF). Being proactive when a problem does arise and catching an infection soon will only lead to better lung function in the future. So have hope! Hospitalization now is not a prediction by any means of things to come!!!

3. Being pacreatic sufficient or insufficient isn't a sign of life expectacy either. I know plenty of CFers who don't need digestive enzymes, but their lungs are in awful shape. And I know CFers with good lungs who happen to need to pop a few enzymes every time they eat.

Hang in there <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're doing the right thing by being proactive!

 

[NoExcuses]

Few comments


1. I think it's horrible that your doctor is telling you hold mild/moderate/severe your child will be. CF is so difficult to predict and to set expectations like that is awful. This is a great case in point. You were told your child is mild and now she may need to be hospitalized which goes against the expectations your doc set. That is bad medicine, in my opinion

2. I was hospitalized at aournd 7 months myself. It's not the end of the world. I'm 25 now and my FEV1's are 95% (lung function is considered to be the same as someone without CF). Being proactive when a problem does arise and catching an infection soon will only lead to better lung function in the future. So have hope! Hospitalization now is not a prediction by any means of things to come!!!

3. Being pacreatic sufficient or insufficient isn't a sign of life expectacy either. I know plenty of CFers who don't need digestive enzymes, but their lungs are in awful shape. And I know CFers with good lungs who happen to need to pop a few enzymes every time they eat.

Hang in there <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're doing the right thing by being proactive!

 

[Mommafirst]

Lauren -- she was on a 21 day course of augmentin that they stopped at 14 days because she was still coughing and switched her to azythromicin. She does eat solids, but not much -- because she has no interest. In fact we are scheduled at a feeding clinic tomorrow am to figure that out.


Amy -- I do think I misspoke (wrote). The doctor's actually told us that her one mutation is extremely rare, and that while there is no way to predict what will happen, they are hopeful she will not present a more typical form of CF. My words above were more my perception/hope. I think I'm still in that little denial where I know that anything can happen with the progression of this CF, but I have a hard time admitting it to my conscious self.

I plan to stay very optimistic, I know the power of that. But today I'm just a little freaked by the possibilities. I so appreciate all of your words. So few people in my life understand what this all means, so its good to have a place where I can get this type of feedback.

Our appt. is at 2pm EST. I will post an update when I can.

 

[Mommafirst]

Lauren -- she was on a 21 day course of augmentin that they stopped at 14 days because she was still coughing and switched her to azythromicin. She does eat solids, but not much -- because she has no interest. In fact we are scheduled at a feeding clinic tomorrow am to figure that out.


Amy -- I do think I misspoke (wrote). The doctor's actually told us that her one mutation is extremely rare, and that while there is no way to predict what will happen, they are hopeful she will not present a more typical form of CF. My words above were more my perception/hope. I think I'm still in that little denial where I know that anything can happen with the progression of this CF, but I have a hard time admitting it to my conscious self.

I plan to stay very optimistic, I know the power of that. But today I'm just a little freaked by the possibilities. I so appreciate all of your words. So few people in my life understand what this all means, so its good to have a place where I can get this type of feedback.

Our appt. is at 2pm EST. I will post an update when I can.

 

[Mommafirst]

Lauren -- she was on a 21 day course of augmentin that they stopped at 14 days because she was still coughing and switched her to azythromicin. She does eat solids, but not much -- because she has no interest. In fact we are scheduled at a feeding clinic tomorrow am to figure that out.


Amy -- I do think I misspoke (wrote). The doctor's actually told us that her one mutation is extremely rare, and that while there is no way to predict what will happen, they are hopeful she will not present a more typical form of CF. My words above were more my perception/hope. I think I'm still in that little denial where I know that anything can happen with the progression of this CF, but I have a hard time admitting it to my conscious self.

I plan to stay very optimistic, I know the power of that. But today I'm just a little freaked by the possibilities. I so appreciate all of your words. So few people in my life understand what this all means, so its good to have a place where I can get this type of feedback.

Our appt. is at 2pm EST. I will post an update when I can.

 

[Rebjane]

I've been having trouble posting so I hope this works. Just hoping good thoughts on your Doc visit today. My daughter almost 4 with CF has been hospitalized 3 times so far. Two for abdominal surgeries and once for a resp flare-up. It's never easy to be in the hospital. It is scary but you are your child's advocate, you know her best, even when(should i say especially when) she is a patient in the hospital. Just take it one day at a time, if she needs IV's she may feel alot better after a few days of IV's and that may ease your worries as well as nip this infection in the bud.

Rebecca(mom to Sammy 8 no CF and Maggie almost 4 with CF)

 

[Rebjane]

I've been having trouble posting so I hope this works. Just hoping good thoughts on your Doc visit today. My daughter almost 4 with CF has been hospitalized 3 times so far. Two for abdominal surgeries and once for a resp flare-up. It's never easy to be in the hospital. It is scary but you are your child's advocate, you know her best, even when(should i say especially when) she is a patient in the hospital. Just take it one day at a time, if she needs IV's she may feel alot better after a few days of IV's and that may ease your worries as well as nip this infection in the bud.

Rebecca(mom to Sammy 8 no CF and Maggie almost 4 with CF)

 

[Rebjane]

I've been having trouble posting so I hope this works. Just hoping good thoughts on your Doc visit today. My daughter almost 4 with CF has been hospitalized 3 times so far. Two for abdominal surgeries and once for a resp flare-up. It's never easy to be in the hospital. It is scary but you are your child's advocate, you know her best, even when(should i say especially when) she is a patient in the hospital. Just take it one day at a time, if she needs IV's she may feel alot better after a few days of IV's and that may ease your worries as well as nip this infection in the bud.

Rebecca(mom to Sammy 8 no CF and Maggie almost 4 with CF)

 

[JennifersHope]

Hi Heather,

I am praying and hoping that you little baby girl doesn't need the hospital, but if she does, just remember, it will make her better, ward off any lung infections which could cause lung damage.. and she will be feeling much better for the holidays.

Let us know.. I feel for you,

Jennifer

 

[JennifersHope]

Hi Heather,

I am praying and hoping that you little baby girl doesn't need the hospital, but if she does, just remember, it will make her better, ward off any lung infections which could cause lung damage.. and she will be feeling much better for the holidays.

Let us know.. I feel for you,

Jennifer