Am i waiting too long?

N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

nicole781

New member
So, Alexa was born on 6/12, and I have our first appointmnet with her at the cf clinic on 7/3......is this waiting too long? I dont want to not be doing treatments that she needs, but they made it sound like waiting the few weeks was ok. Also when i do go in, what should i be askign them about? She's getting some blood work, a sweat test and a chest xray when we go, and i'm pretty sure that we're going to be starting on enzymes, but what else should i be focusing on? Oh, on a side note... i was goingot breast-feed, but it didnt work out for us, so the clinic told us about a study that they are doing for cf kids with formula.....is anyone else on it, and how is it working?
Thanks everyone!
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
N

NoExcuses

New member
That's too bad that breast feeding didn't work out. Any way you could make it work? You will be giving your child something that no formula would ever be able to give - which is particularly important since she has CF.

Ask them about Chest Percussoin Therapy (CPT, clapping, etc).

I would recommend that you get into clinic as soon as possible.

Take care and good luck.
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
M

mneville

Guest
Congrats on Baby Alexa!
Our son Aidan was diagnosed at 8 days old and I also tried breastfeeding. I did it for about 4 weeks but he was losing weight quickly and it became so hard with all the enzymes ect...

So we did the Formula Study you are speaking about. We got free formula for a year and still don't know if it was regular formula or the enhanced DHA stuff. It was the best decision we made!! Whatever it was- Aidan did awesome with it and his weight skyrocketed. At one year old, he was in the 90% for weight.

So I would definetly talk to your center and seriously consider the study. It can only benefit. Good luck!

Megan
 
T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
My plan was to breastfeed both my daughters as well. My first born, Kayla, was not dx until she was 14 months old, so I didn't know that she had CF when born. I tried breastfeeding, but she was always starving. She would nurse for over an hour and then an hour later, she was hungry again. I remember a breaking point when I just started bawling and telling her that there was no way she could be hungry again. My nipples were bleeding and raw because she was nursing around the clock<img src="i/expressions/face-icon-small-sad.gif" border="0"> I was miserable, and so was she because I was so upset. After a month, I stopped.

When Hannah was born, she was dx at a month. I tried nursing her as well, but I was simply exhausted with a newly dx CF toddler who still was having problems. I only made it one month with her as well.

Don't feel bad if it is difficult. I really wanted to be able to go longer nursing them because it is so good for them. And I felt very guilty. Don't let that happen to you. Hannah was on Pregistimil (spelling?) and it was pretty expensive (like double the price of regular formula and she ate twice what other babies her age did)...but it worked great! It specifically says on the can for cystic fibrosis.

I am not aware of the study...my girls are too old<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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