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Very confused
- Thread starter amyr
- Start date
His Dr. is pretty sure it's atypical cf. We are going to do the nasal potential difference and check for CBVAD. He is going to do sputum cultures on all of them and start treating all with the vest. All three are already on Flovent, albuterol, singular, vitamins,& nasonex so we are off to a good start. DS1 has already responded well to enzymes. We are going to meet with the Dr. next week so he can tell us all we need to know.
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
His Dr. is pretty sure it's atypical cf. We are going to do the nasal potential difference and check for CBVAD. He is going to do sputum cultures on all of them and start treating all with the vest. All three are already on Flovent, albuterol, singular, vitamins,& nasonex so we are off to a good start. DS1 has already responded well to enzymes. We are going to meet with the Dr. next week so he can tell us all we need to know.
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
His Dr. is pretty sure it's atypical cf. We are going to do the nasal potential difference and check for CBVAD. He is going to do sputum cultures on all of them and start treating all with the vest. All three are already on Flovent, albuterol, singular, vitamins,& nasonex so we are off to a good start. DS1 has already responded well to enzymes. We are going to meet with the Dr. next week so he can tell us all we need to know.
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
His Dr. is pretty sure it's atypical cf. We are going to do the nasal potential difference and check for CBVAD. He is going to do sputum cultures on all of them and start treating all with the vest. All three are already on Flovent, albuterol, singular, vitamins,& nasonex so we are off to a good start. DS1 has already responded well to enzymes. We are going to meet with the Dr. next week so he can tell us all we need to know.
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
Amy
His Dr. is pretty sure it's atypical cf. We are going to do the nasal potential difference and check for CBVAD. He is going to do sputum cultures on all of them and start treating all with the vest. All three are already on Flovent, albuterol, singular, vitamins,& nasonex so we are off to a good start. DS1 has already responded well to enzymes. We are going to meet with the Dr. next week so he can tell us all we need to know.
<br />
<br />We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
<br />Amy
<br />
<br />We are still going to do the deletion testing on DS1 and the full panel on the other two. My ENT sent tissue samples from my sinus surgery yesterday to NIH so the waiting game will continue. Thank you all for your responces and imput. This site has been so helpful through out this very difficult process.
<br />Amy
We (my two children and I) had our genetic test today. The lab slips for my kids said brother positive for Cystic Fibrosis. WOW I am walking around in a fog. This has been my reality for years but I am still in denial. Seeing it in writing today blew me away. I have known for ten years that there was something wrong with my child and have been so frustrated with not knowing what. Now that I have my answers I don't know how to deal with this.
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
We (my two children and I) had our genetic test today. The lab slips for my kids said brother positive for Cystic Fibrosis. WOW I am walking around in a fog. This has been my reality for years but I am still in denial. Seeing it in writing today blew me away. I have known for ten years that there was something wrong with my child and have been so frustrated with not knowing what. Now that I have my answers I don't know how to deal with this.
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
We (my two children and I) had our genetic test today. The lab slips for my kids said brother positive for Cystic Fibrosis. WOW I am walking around in a fog. This has been my reality for years but I am still in denial. Seeing it in writing today blew me away. I have known for ten years that there was something wrong with my child and have been so frustrated with not knowing what. Now that I have my answers I don't know how to deal with this.
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
We (my two children and I) had our genetic test today. The lab slips for my kids said brother positive for Cystic Fibrosis. WOW I am walking around in a fog. This has been my reality for years but I am still in denial. Seeing it in writing today blew me away. I have known for ten years that there was something wrong with my child and have been so frustrated with not knowing what. Now that I have my answers I don't know how to deal with this.
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
We (my two children and I) had our genetic test today. The lab slips for my kids said brother positive for Cystic Fibrosis. WOW I am walking around in a fog. This has been my reality for years but I am still in denial. Seeing it in writing today blew me away. I have known for ten years that there was something wrong with my child and have been so frustrated with not knowing what. Now that I have my answers I don't know how to deal with this.
<br />
<br />My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
<br />
<br />My daughter has stomach issues. Two days ago she pooped orange and it looked like I dropped oil in the toilet I wanted to cry. She is six yrs old and weighs as much as a three year old. How do you do this???
honestly, you do it one day at a time! You try not to worry about tomorrow until tomorrow and you learn to love and appreciate every single day and realize that nobody has any guarentee in life.
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
honestly, you do it one day at a time! You try not to worry about tomorrow until tomorrow and you learn to love and appreciate every single day and realize that nobody has any guarentee in life.
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
honestly, you do it one day at a time! You try not to worry about tomorrow until tomorrow and you learn to love and appreciate every single day and realize that nobody has any guarentee in life.
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
honestly, you do it one day at a time! You try not to worry about tomorrow until tomorrow and you learn to love and appreciate every single day and realize that nobody has any guarentee in life.
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
You do what you can, fix what you can, and not worry about what you can't.
It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
You can do this! There are several of us here and willing to give you the support you need to get through all of this.
Keep us posted and certainly let us know if there is anything I can do for you,
Patty
honestly, you do it one day at a time! You try not to worry about tomorrow until tomorrow and you learn to love and appreciate every single day and realize that nobody has any guarentee in life.
<br />
<br />You do what you can, fix what you can, and not worry about what you can't.
<br />
<br />It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
<br />
<br />The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
<br />
<br />You can do this! There are several of us here and willing to give you the support you need to get through all of this.
<br />
<br />Keep us posted and certainly let us know if there is anything I can do for you,
<br />
<br />Patty
<br />
<br />You do what you can, fix what you can, and not worry about what you can't.
<br />
<br />It sounds like your daughter needs some enzymes and I would call the doc, tell him what you told us about what her poop looked like and ask if you could try some enzymes for her to see if it helps or not while you are waiting for the test to come back. Enzymes won't hurt her at all so trying them might 1. do the trick and 2. make her feel better.
<br />
<br />The best thing you can do to help you through all this is to make sure each is getting the very best medical care possible, is taking the appriopriate meds, and doing the treatments.
<br />
<br />You can do this! There are several of us here and willing to give you the support you need to get through all of this.
<br />
<br />Keep us posted and certainly let us know if there is anything I can do for you,
<br />
<br />Patty