Very confused

JORDYSMOM · Apr 10, 2008

I'm sorry. I know you didn't want it to be true. As Patty said, you can do this. I won't lie; it won't be easy, but it's doable.

For me, the thing that helped the most, was getting to know the people here, and educating myself about the disease. Not from medical journals, but from people who live with CF every day. Reading what other parents go through made me feel less alone in the world. Seeing adults with families and careers gave me hope for my son's future.

I have to say that as bad as CF is, I'm glad that I finally have a diagnosis, and a treatment plan for my son. After his dx, his quality of life improved greatly, and he really is healthier than he's ever been.

It will take time, but you will settle into a routine, and we will be here for you all along the way.

Stacey

JORDYSMOM · Apr 10, 2008

I'm sorry. I know you didn't want it to be true. As Patty said, you can do this. I won't lie; it won't be easy, but it's doable.

For me, the thing that helped the most, was getting to know the people here, and educating myself about the disease. Not from medical journals, but from people who live with CF every day. Reading what other parents go through made me feel less alone in the world. Seeing adults with families and careers gave me hope for my son's future.

I have to say that as bad as CF is, I'm glad that I finally have a diagnosis, and a treatment plan for my son. After his dx, his quality of life improved greatly, and he really is healthier than he's ever been.

It will take time, but you will settle into a routine, and we will be here for you all along the way.

Stacey

JORDYSMOM · Apr 10, 2008

I'm sorry. I know you didn't want it to be true. As Patty said, you can do this. I won't lie; it won't be easy, but it's doable.

For me, the thing that helped the most, was getting to know the people here, and educating myself about the disease. Not from medical journals, but from people who live with CF every day. Reading what other parents go through made me feel less alone in the world. Seeing adults with families and careers gave me hope for my son's future.

I have to say that as bad as CF is, I'm glad that I finally have a diagnosis, and a treatment plan for my son. After his dx, his quality of life improved greatly, and he really is healthier than he's ever been.

It will take time, but you will settle into a routine, and we will be here for you all along the way.

Stacey

JORDYSMOM · Apr 10, 2008

I'm sorry. I know you didn't want it to be true. As Patty said, you can do this. I won't lie; it won't be easy, but it's doable.

For me, the thing that helped the most, was getting to know the people here, and educating myself about the disease. Not from medical journals, but from people who live with CF every day. Reading what other parents go through made me feel less alone in the world. Seeing adults with families and careers gave me hope for my son's future.

I have to say that as bad as CF is, I'm glad that I finally have a diagnosis, and a treatment plan for my son. After his dx, his quality of life improved greatly, and he really is healthier than he's ever been.

It will take time, but you will settle into a routine, and we will be here for you all along the way.

Stacey

JORDYSMOM · Apr 10, 2008

I'm sorry. I know you didn't want it to be true. As Patty said, you can do this. I won't lie; it won't be easy, but it's doable.
 
 For me, the thing that helped the most, was getting to know the people here, and educating myself about the disease. Not from medical journals, but from people who live with CF every day. Reading what other parents go through made me feel less alone in the world. Seeing adults with families and careers gave me hope for my son's future.
 
 I have to say that as bad as CF is, I'm glad that I finally have a diagnosis, and a treatment plan for my son. After his dx, his quality of life improved greatly, and he really is healthier than he's ever been.
 
 It will take time, but you will settle into a routine, and we will be here for you all along the way.
 
 Stacey

TonyaH · Apr 10, 2008

I just wanted to welcome you here and let you know that, while I am sorry for your diagnosis, I am glad you found a place where everyone knows how your are feeling. You are not alone in this. I will think positive thoughts that your family finds peace in this diagnosis and improved health with proper treatment.

TonyaH · Apr 10, 2008

I just wanted to welcome you here and let you know that, while I am sorry for your diagnosis, I am glad you found a place where everyone knows how your are feeling. You are not alone in this. I will think positive thoughts that your family finds peace in this diagnosis and improved health with proper treatment.

TonyaH · Apr 10, 2008

I just wanted to welcome you here and let you know that, while I am sorry for your diagnosis, I am glad you found a place where everyone knows how your are feeling. You are not alone in this. I will think positive thoughts that your family finds peace in this diagnosis and improved health with proper treatment.

TonyaH · Apr 10, 2008

I just wanted to welcome you here and let you know that, while I am sorry for your diagnosis, I am glad you found a place where everyone knows how your are feeling. You are not alone in this. I will think positive thoughts that your family finds peace in this diagnosis and improved health with proper treatment.

TonyaH · Apr 10, 2008

I just wanted to welcome you here and let you know that, while I am sorry for your diagnosis, I am glad you found a place where everyone knows how your are feeling. You are not alone in this. I will think positive thoughts that your family finds peace in this diagnosis and improved health with proper treatment.

amyr · Apr 27, 2008

The other two came back both identical two copies of M470V on different strands. We are still waiting for my Ambry results. My daughters culture (throat) came back growing strep (not strep B) and the three year old came back normal. We are still waiting for the third one to come back. We are now talking about doing broncs on all three so we can get a more accurate picture and confirm a dx.

They are going to treat all three for atypical cf. All three are currently sick again. My daughter had an endoscopy and has reflux. He found a suspicious coating on her esophagus thought it was candida but negative so he doesn't know what it is. (He isn't concerned) I am!!

I have found several studies saying that M470V can alter CFTR function enough to be disease causing and unfortunately my children having 2 copies fit the mold. All I want is for my kids quality of life to improve.

amyr · Apr 27, 2008

The other two came back both identical two copies of M470V on different strands. We are still waiting for my Ambry results. My daughters culture (throat) came back growing strep (not strep B) and the three year old came back normal. We are still waiting for the third one to come back. We are now talking about doing broncs on all three so we can get a more accurate picture and confirm a dx.

They are going to treat all three for atypical cf. All three are currently sick again. My daughter had an endoscopy and has reflux. He found a suspicious coating on her esophagus thought it was candida but negative so he doesn't know what it is. (He isn't concerned) I am!!

I have found several studies saying that M470V can alter CFTR function enough to be disease causing and unfortunately my children having 2 copies fit the mold. All I want is for my kids quality of life to improve.

amyr · Apr 27, 2008

The other two came back both identical two copies of M470V on different strands. We are still waiting for my Ambry results. My daughters culture (throat) came back growing strep (not strep B) and the three year old came back normal. We are still waiting for the third one to come back. We are now talking about doing broncs on all three so we can get a more accurate picture and confirm a dx.

They are going to treat all three for atypical cf. All three are currently sick again. My daughter had an endoscopy and has reflux. He found a suspicious coating on her esophagus thought it was candida but negative so he doesn't know what it is. (He isn't concerned) I am!!

I have found several studies saying that M470V can alter CFTR function enough to be disease causing and unfortunately my children having 2 copies fit the mold. All I want is for my kids quality of life to improve.

amyr · Apr 27, 2008

The other two came back both identical two copies of M470V on different strands. We are still waiting for my Ambry results. My daughters culture (throat) came back growing strep (not strep B) and the three year old came back normal. We are still waiting for the third one to come back. We are now talking about doing broncs on all three so we can get a more accurate picture and confirm a dx.

They are going to treat all three for atypical cf. All three are currently sick again. My daughter had an endoscopy and has reflux. He found a suspicious coating on her esophagus thought it was candida but negative so he doesn't know what it is. (He isn't concerned) I am!!

I have found several studies saying that M470V can alter CFTR function enough to be disease causing and unfortunately my children having 2 copies fit the mold. All I want is for my kids quality of life to improve.

amyr · Apr 27, 2008

The other two came back both identical two copies of M470V on different strands. We are still waiting for my Ambry results. My daughters culture (throat) came back growing strep (not strep B) and the three year old came back normal. We are still waiting for the third one to come back. We are now talking about doing broncs on all three so we can get a more accurate picture and confirm a dx.
 
 They are going to treat all three for atypical cf. All three are currently sick again. My daughter had an endoscopy and has reflux. He found a suspicious coating on her esophagus thought it was candida but negative so he doesn't know what it is. (He isn't concerned) I am!!
 
 I have found several studies saying that M470V can alter CFTR function enough to be disease causing and unfortunately my children having 2 copies fit the mold. All I want is for my kids quality of life to improve.

Mommafirst · Apr 27, 2008