New Here - Introduction

Ratatosk

Administrator
Staff member
Welcome! What you'll find on this site, that despite having the same genetic mutations, there are other factors to consider. CF is a progressive diesease and symptoms vary, the progression of the disease varies. Some people aren't diagnosed until later on, so at least you know right away and you can hit the ground running as far as treatments, making sure your child gets adequate nutrition... Your child will most likely have to be on digestive enzymes due to pancreatic insufficiency. For the most part cfers are born with normal lungs, but with the thick sticky mucus, increased infections over time, the lungs will become effective. Sometimes there are sinus issues... Best bet is to focus on being proactive -- keeping your child happy and healthy.

DS was born with a bowel obstruction due to meconium illeus. He needed surgery to repair the damage, clear the blockage... Spent several weeks in the NICU recovering from his surgery, and then from a couple infections he picked up while being hospitalized. We've been doing CPT with nebs 3-4 times a day since he was a few days old. He got a vest about a year ago.
 

Ratatosk

Administrator
Staff member
Welcome! What you'll find on this site, that despite having the same genetic mutations, there are other factors to consider. CF is a progressive diesease and symptoms vary, the progression of the disease varies. Some people aren't diagnosed until later on, so at least you know right away and you can hit the ground running as far as treatments, making sure your child gets adequate nutrition... Your child will most likely have to be on digestive enzymes due to pancreatic insufficiency. For the most part cfers are born with normal lungs, but with the thick sticky mucus, increased infections over time, the lungs will become effective. Sometimes there are sinus issues... Best bet is to focus on being proactive -- keeping your child happy and healthy.

DS was born with a bowel obstruction due to meconium illeus. He needed surgery to repair the damage, clear the blockage... Spent several weeks in the NICU recovering from his surgery, and then from a couple infections he picked up while being hospitalized. We've been doing CPT with nebs 3-4 times a day since he was a few days old. He got a vest about a year ago.
 

Ratatosk

Administrator
Staff member
Welcome! What you'll find on this site, that despite having the same genetic mutations, there are other factors to consider. CF is a progressive diesease and symptoms vary, the progression of the disease varies. Some people aren't diagnosed until later on, so at least you know right away and you can hit the ground running as far as treatments, making sure your child gets adequate nutrition... Your child will most likely have to be on digestive enzymes due to pancreatic insufficiency. For the most part cfers are born with normal lungs, but with the thick sticky mucus, increased infections over time, the lungs will become effective. Sometimes there are sinus issues... Best bet is to focus on being proactive -- keeping your child happy and healthy.

DS was born with a bowel obstruction due to meconium illeus. He needed surgery to repair the damage, clear the blockage... Spent several weeks in the NICU recovering from his surgery, and then from a couple infections he picked up while being hospitalized. We've been doing CPT with nebs 3-4 times a day since he was a few days old. He got a vest about a year ago.
 

Ratatosk

Administrator
Staff member
Welcome! What you'll find on this site, that despite having the same genetic mutations, there are other factors to consider. CF is a progressive diesease and symptoms vary, the progression of the disease varies. Some people aren't diagnosed until later on, so at least you know right away and you can hit the ground running as far as treatments, making sure your child gets adequate nutrition... Your child will most likely have to be on digestive enzymes due to pancreatic insufficiency. For the most part cfers are born with normal lungs, but with the thick sticky mucus, increased infections over time, the lungs will become effective. Sometimes there are sinus issues... Best bet is to focus on being proactive -- keeping your child happy and healthy.

DS was born with a bowel obstruction due to meconium illeus. He needed surgery to repair the damage, clear the blockage... Spent several weeks in the NICU recovering from his surgery, and then from a couple infections he picked up while being hospitalized. We've been doing CPT with nebs 3-4 times a day since he was a few days old. He got a vest about a year ago.
 

Ratatosk

Administrator
Staff member
Welcome! What you'll find on this site, that despite having the same genetic mutations, there are other factors to consider. CF is a progressive diesease and symptoms vary, the progression of the disease varies. Some people aren't diagnosed until later on, so at least you know right away and you can hit the ground running as far as treatments, making sure your child gets adequate nutrition... Your child will most likely have to be on digestive enzymes due to pancreatic insufficiency. For the most part cfers are born with normal lungs, but with the thick sticky mucus, increased infections over time, the lungs will become effective. Sometimes there are sinus issues... Best bet is to focus on being proactive -- keeping your child happy and healthy.

DS was born with a bowel obstruction due to meconium illeus. He needed surgery to repair the damage, clear the blockage... Spent several weeks in the NICU recovering from his surgery, and then from a couple infections he picked up while being hospitalized. We've been doing CPT with nebs 3-4 times a day since he was a few days old. He got a vest about a year ago.
 

Alyssa

New member
Welcome to the site <b>kcp</b> -- I would like to suggest you start a brand new thread of your own, more people might see it. Also there are a lot of adults on this board who are double delta F508, if you would like to hear from them you might want to post on the adult board. You can also do an advanced search for double delta for previous posts - it might be worded differently (ddelta, double d 508, double deltaF508 -- you get the idea) but I'm sure you can read some of what has been posted before.
 

Alyssa

New member
Welcome to the site <b>kcp</b> -- I would like to suggest you start a brand new thread of your own, more people might see it. Also there are a lot of adults on this board who are double delta F508, if you would like to hear from them you might want to post on the adult board. You can also do an advanced search for double delta for previous posts - it might be worded differently (ddelta, double d 508, double deltaF508 -- you get the idea) but I'm sure you can read some of what has been posted before.
 

Alyssa

New member
Welcome to the site <b>kcp</b> -- I would like to suggest you start a brand new thread of your own, more people might see it. Also there are a lot of adults on this board who are double delta F508, if you would like to hear from them you might want to post on the adult board. You can also do an advanced search for double delta for previous posts - it might be worded differently (ddelta, double d 508, double deltaF508 -- you get the idea) but I'm sure you can read some of what has been posted before.
 

Alyssa

New member
Welcome to the site <b>kcp</b> -- I would like to suggest you start a brand new thread of your own, more people might see it. Also there are a lot of adults on this board who are double delta F508, if you would like to hear from them you might want to post on the adult board. You can also do an advanced search for double delta for previous posts - it might be worded differently (ddelta, double d 508, double deltaF508 -- you get the idea) but I'm sure you can read some of what has been posted before.
 

Alyssa

New member
Welcome to the site <b>kcp</b> -- I would like to suggest you start a brand new thread of your own, more people might see it. Also there are a lot of adults on this board who are double delta F508, if you would like to hear from them you might want to post on the adult board. You can also do an advanced search for double delta for previous posts - it might be worded differently (ddelta, double d 508, double deltaF508 -- you get the idea) but I'm sure you can read some of what has been posted before.
 

Rebjane

Super Moderator
kcp,

I tried to post earlier somehow it got lost. arg. I was in a very similar situation as you when I was 5 months prego as well. I had an amnio and found out my daughter had CF. She is now 4 1/2 years old and full of life.<img src="i/expressions/face-icon-small-smile.gif" border="0"> My son was 4 years old at the time and had to be sweat tested; he does not have CF. It was an unbelievably stressful time; to be pregnant and find out your unborn child will have CF. I felt alone, angry and sad. Noone I knew had ever been through something like that. Feel free to ask me any questions because, I've been there. You will get through this.
 

Rebjane

Super Moderator
kcp,

I tried to post earlier somehow it got lost. arg. I was in a very similar situation as you when I was 5 months prego as well. I had an amnio and found out my daughter had CF. She is now 4 1/2 years old and full of life.<img src="i/expressions/face-icon-small-smile.gif" border="0"> My son was 4 years old at the time and had to be sweat tested; he does not have CF. It was an unbelievably stressful time; to be pregnant and find out your unborn child will have CF. I felt alone, angry and sad. Noone I knew had ever been through something like that. Feel free to ask me any questions because, I've been there. You will get through this.
 

Rebjane

Super Moderator
kcp,

I tried to post earlier somehow it got lost. arg. I was in a very similar situation as you when I was 5 months prego as well. I had an amnio and found out my daughter had CF. She is now 4 1/2 years old and full of life.<img src="i/expressions/face-icon-small-smile.gif" border="0"> My son was 4 years old at the time and had to be sweat tested; he does not have CF. It was an unbelievably stressful time; to be pregnant and find out your unborn child will have CF. I felt alone, angry and sad. Noone I knew had ever been through something like that. Feel free to ask me any questions because, I've been there. You will get through this.
 

Rebjane

Super Moderator
kcp,

I tried to post earlier somehow it got lost. arg. I was in a very similar situation as you when I was 5 months prego as well. I had an amnio and found out my daughter had CF. She is now 4 1/2 years old and full of life.<img src="i/expressions/face-icon-small-smile.gif" border="0"> My son was 4 years old at the time and had to be sweat tested; he does not have CF. It was an unbelievably stressful time; to be pregnant and find out your unborn child will have CF. I felt alone, angry and sad. Noone I knew had ever been through something like that. Feel free to ask me any questions because, I've been there. You will get through this.
 

Rebjane

Super Moderator
kcp,

I tried to post earlier somehow it got lost. arg. I was in a very similar situation as you when I was 5 months prego as well. I had an amnio and found out my daughter had CF. She is now 4 1/2 years old and full of life.<img src="i/expressions/face-icon-small-smile.gif" border="0"> My son was 4 years old at the time and had to be sweat tested; he does not have CF. It was an unbelievably stressful time; to be pregnant and find out your unborn child will have CF. I felt alone, angry and sad. Noone I knew had ever been through something like that. Feel free to ask me any questions because, I've been there. You will get through this.
 
A

Aspiemom

Guest
Welcome, Julie! I'm glad you found us.

I was diagnosed 4 years ago and just found this site about 10 days ago, so you've done well with your early discovery and I'm sure these people will be a great comfort to you.
 
A

Aspiemom

Guest
Welcome, Julie! I'm glad you found us.

I was diagnosed 4 years ago and just found this site about 10 days ago, so you've done well with your early discovery and I'm sure these people will be a great comfort to you.
 
A

Aspiemom

Guest
Welcome, Julie! I'm glad you found us.

I was diagnosed 4 years ago and just found this site about 10 days ago, so you've done well with your early discovery and I'm sure these people will be a great comfort to you.
 
A

Aspiemom

Guest
Welcome, Julie! I'm glad you found us.

I was diagnosed 4 years ago and just found this site about 10 days ago, so you've done well with your early discovery and I'm sure these people will be a great comfort to you.
 
A

Aspiemom

Guest
Welcome, Julie! I'm glad you found us.

I was diagnosed 4 years ago and just found this site about 10 days ago, so you've done well with your early discovery and I'm sure these people will be a great comfort to you.
 
Top