Need some help?

Koleen · Jan 17, 2008

I'm new, I feel like I have been reading forever. I need some advise or help. Last month I took my daughter in for a cough to the doc. For the past three years like clock work each December she gets the flu, bad cough a visit to the doc. or e.r. and back to normal in a few weeks. This last time the doc. sent her for a sweat test, one sweat test came back 66, the other 50 borderline for CF. It now has been over three weeks waiting for the DNA or mutations to come back. The normal mutations are not found. Is this good or bad? Her A,K, C, D levels are good only lacking Vitiam D. She is producing her own enzymes. Her weight was the reason for concern. She is three years old 3 feet and 27 pounds. I feel lost, not sure what to think? Her chest X-ray came back fine. I'm a bundle of nerves.
She can have a mild case I'm told? I'm not sure what to think right now?
No salty skin, no cough only when she gets the flu. ???
Any advice

Koleen · Jan 17, 2008

I'm new, I feel like I have been reading forever. I need some advise or help. Last month I took my daughter in for a cough to the doc. For the past three years like clock work each December she gets the flu, bad cough a visit to the doc. or e.r. and back to normal in a few weeks. This last time the doc. sent her for a sweat test, one sweat test came back 66, the other 50 borderline for CF. It now has been over three weeks waiting for the DNA or mutations to come back. The normal mutations are not found. Is this good or bad? Her A,K, C, D levels are good only lacking Vitiam D. She is producing her own enzymes. Her weight was the reason for concern. She is three years old 3 feet and 27 pounds. I feel lost, not sure what to think? Her chest X-ray came back fine. I'm a bundle of nerves.
She can have a mild case I'm told? I'm not sure what to think right now?
No salty skin, no cough only when she gets the flu. ???
Any advice

Koleen · Jan 17, 2008

I'm new, I feel like I have been reading forever. I need some advise or help. Last month I took my daughter in for a cough to the doc. For the past three years like clock work each December she gets the flu, bad cough a visit to the doc. or e.r. and back to normal in a few weeks. This last time the doc. sent her for a sweat test, one sweat test came back 66, the other 50 borderline for CF. It now has been over three weeks waiting for the DNA or mutations to come back. The normal mutations are not found. Is this good or bad? Her A,K, C, D levels are good only lacking Vitiam D. She is producing her own enzymes. Her weight was the reason for concern. She is three years old 3 feet and 27 pounds. I feel lost, not sure what to think? Her chest X-ray came back fine. I'm a bundle of nerves.
She can have a mild case I'm told? I'm not sure what to think right now?
No salty skin, no cough only when she gets the flu. ???
Any advice

Koleen · Jan 17, 2008

I'm new, I feel like I have been reading forever. I need some advise or help. Last month I took my daughter in for a cough to the doc. For the past three years like clock work each December she gets the flu, bad cough a visit to the doc. or e.r. and back to normal in a few weeks. This last time the doc. sent her for a sweat test, one sweat test came back 66, the other 50 borderline for CF. It now has been over three weeks waiting for the DNA or mutations to come back. The normal mutations are not found. Is this good or bad? Her A,K, C, D levels are good only lacking Vitiam D. She is producing her own enzymes. Her weight was the reason for concern. She is three years old 3 feet and 27 pounds. I feel lost, not sure what to think? Her chest X-ray came back fine. I'm a bundle of nerves.
She can have a mild case I'm told? I'm not sure what to think right now?
No salty skin, no cough only when she gets the flu. ???
Any advice

Koleen · Jan 17, 2008

I'm new, I feel like I have been reading forever. I need some advise or help. Last month I took my daughter in for a cough to the doc. For the past three years like clock work each December she gets the flu, bad cough a visit to the doc. or e.r. and back to normal in a few weeks. This last time the doc. sent her for a sweat test, one sweat test came back 66, the other 50 borderline for CF. It now has been over three weeks waiting for the DNA or mutations to come back. The normal mutations are not found. Is this good or bad? Her A,K, C, D levels are good only lacking Vitiam D. She is producing her own enzymes. Her weight was the reason for concern. She is three years old 3 feet and 27 pounds. I feel lost, not sure what to think? Her chest X-ray came back fine. I'm a bundle of nerves.
She can have a mild case I'm told? I'm not sure what to think right now?
No salty skin, no cough only when she gets the flu. ???
Any advice

Emily65Roses · Jan 17, 2008

There are people who have lung problems and no digestive problems... or digestive problems and no lung problems... Some have both. Some children are so healthy they don't exhibit either for a long time. Your daughter could easily have CF, and she could easily not. Sweat tests are kind of garbage at this point. If you want to be sure, demand she get a genetic blood test done. That's a LOT more accurate.

Emily65Roses · Jan 17, 2008

There are people who have lung problems and no digestive problems... or digestive problems and no lung problems... Some have both. Some children are so healthy they don't exhibit either for a long time. Your daughter could easily have CF, and she could easily not. Sweat tests are kind of garbage at this point. If you want to be sure, demand she get a genetic blood test done. That's a LOT more accurate.

Emily65Roses · Jan 17, 2008

There are people who have lung problems and no digestive problems... or digestive problems and no lung problems... Some have both. Some children are so healthy they don't exhibit either for a long time. Your daughter could easily have CF, and she could easily not. Sweat tests are kind of garbage at this point. If you want to be sure, demand she get a genetic blood test done. That's a LOT more accurate.

Emily65Roses · Jan 17, 2008

There are people who have lung problems and no digestive problems... or digestive problems and no lung problems... Some have both. Some children are so healthy they don't exhibit either for a long time. Your daughter could easily have CF, and she could easily not. Sweat tests are kind of garbage at this point. If you want to be sure, demand she get a genetic blood test done. That's a LOT more accurate.

Emily65Roses · Jan 17, 2008

There are people who have lung problems and no digestive problems... or digestive problems and no lung problems... Some have both. Some children are so healthy they don't exhibit either for a long time. Your daughter could easily have CF, and she could easily not. Sweat tests are kind of garbage at this point. If you want to be sure, demand she get a genetic blood test done. That's a LOT more accurate.

JORDYSMOM · Jan 17, 2008

Hi Koleen and welcome to the site. I'm sorry you are struggling to find answers about your daughter. I am encouraged to hear that a doctor has ordered the DNA test. A lot of parents have to fight tooth and nail to get that done with borderline sweat test numbers.

Not all CFers have salty skin and cough all of the time. There are so many different ways it can manifest itself. My son has mostly sinus and lung involvement. He wasn't dx until he was 15, because he didn't present with the "normal" CF symptoms, or at least the more obvious ones. I'm learning that one person's normal is often very different from another person's.

I know the waiting is hard, but it sounds like they are running the full panel genetic test. That means they are checking for ALL known mutations. If you ask me, it's not good or bad. It just means that if your daughter has CF, she has less common mutations. Mutations can give you an idea of how one might progress, but it's not set in stone. Every patient is different as I said above. There are a lot of variables that go into determining one's clinical outcome. Environment and compliance with treatments definitely come into play.

Nobody wants to be told that their child has this disease, but there can be good in it. Once you have a diagnosis, you can give her the proper care, and hopefully her health will improve. This site can be so helpful with much information, and support from other parents and patients. I wish you and your daughter the best. Let us know what you find out.

Stacey

JORDYSMOM · Jan 17, 2008

Hi Koleen and welcome to the site. I'm sorry you are struggling to find answers about your daughter. I am encouraged to hear that a doctor has ordered the DNA test. A lot of parents have to fight tooth and nail to get that done with borderline sweat test numbers.

Not all CFers have salty skin and cough all of the time. There are so many different ways it can manifest itself. My son has mostly sinus and lung involvement. He wasn't dx until he was 15, because he didn't present with the "normal" CF symptoms, or at least the more obvious ones. I'm learning that one person's normal is often very different from another person's.

I know the waiting is hard, but it sounds like they are running the full panel genetic test. That means they are checking for ALL known mutations. If you ask me, it's not good or bad. It just means that if your daughter has CF, she has less common mutations. Mutations can give you an idea of how one might progress, but it's not set in stone. Every patient is different as I said above. There are a lot of variables that go into determining one's clinical outcome. Environment and compliance with treatments definitely come into play.

Nobody wants to be told that their child has this disease, but there can be good in it. Once you have a diagnosis, you can give her the proper care, and hopefully her health will improve. This site can be so helpful with much information, and support from other parents and patients. I wish you and your daughter the best. Let us know what you find out.

Stacey

JORDYSMOM · Jan 17, 2008

Hi Koleen and welcome to the site. I'm sorry you are struggling to find answers about your daughter. I am encouraged to hear that a doctor has ordered the DNA test. A lot of parents have to fight tooth and nail to get that done with borderline sweat test numbers.

Not all CFers have salty skin and cough all of the time. There are so many different ways it can manifest itself. My son has mostly sinus and lung involvement. He wasn't dx until he was 15, because he didn't present with the "normal" CF symptoms, or at least the more obvious ones. I'm learning that one person's normal is often very different from another person's.

I know the waiting is hard, but it sounds like they are running the full panel genetic test. That means they are checking for ALL known mutations. If you ask me, it's not good or bad. It just means that if your daughter has CF, she has less common mutations. Mutations can give you an idea of how one might progress, but it's not set in stone. Every patient is different as I said above. There are a lot of variables that go into determining one's clinical outcome. Environment and compliance with treatments definitely come into play.

Nobody wants to be told that their child has this disease, but there can be good in it. Once you have a diagnosis, you can give her the proper care, and hopefully her health will improve. This site can be so helpful with much information, and support from other parents and patients. I wish you and your daughter the best. Let us know what you find out.

Stacey

JORDYSMOM · Jan 17, 2008

Hi Koleen and welcome to the site. I'm sorry you are struggling to find answers about your daughter. I am encouraged to hear that a doctor has ordered the DNA test. A lot of parents have to fight tooth and nail to get that done with borderline sweat test numbers.

Not all CFers have salty skin and cough all of the time. There are so many different ways it can manifest itself. My son has mostly sinus and lung involvement. He wasn't dx until he was 15, because he didn't present with the "normal" CF symptoms, or at least the more obvious ones. I'm learning that one person's normal is often very different from another person's.

I know the waiting is hard, but it sounds like they are running the full panel genetic test. That means they are checking for ALL known mutations. If you ask me, it's not good or bad. It just means that if your daughter has CF, she has less common mutations. Mutations can give you an idea of how one might progress, but it's not set in stone. Every patient is different as I said above. There are a lot of variables that go into determining one's clinical outcome. Environment and compliance with treatments definitely come into play.

Nobody wants to be told that their child has this disease, but there can be good in it. Once you have a diagnosis, you can give her the proper care, and hopefully her health will improve. This site can be so helpful with much information, and support from other parents and patients. I wish you and your daughter the best. Let us know what you find out.

Stacey

JORDYSMOM · Jan 17, 2008

Hi Koleen and welcome to the site. I'm sorry you are struggling to find answers about your daughter. I am encouraged to hear that a doctor has ordered the DNA test. A lot of parents have to fight tooth and nail to get that done with borderline sweat test numbers.

Not all CFers have salty skin and cough all of the time. There are so many different ways it can manifest itself. My son has mostly sinus and lung involvement. He wasn't dx until he was 15, because he didn't present with the "normal" CF symptoms, or at least the more obvious ones. I'm learning that one person's normal is often very different from another person's.

I know the waiting is hard, but it sounds like they are running the full panel genetic test. That means they are checking for ALL known mutations. If you ask me, it's not good or bad. It just means that if your daughter has CF, she has less common mutations. Mutations can give you an idea of how one might progress, but it's not set in stone. Every patient is different as I said above. There are a lot of variables that go into determining one's clinical outcome. Environment and compliance with treatments definitely come into play.

Nobody wants to be told that their child has this disease, but there can be good in it. Once you have a diagnosis, you can give her the proper care, and hopefully her health will improve. This site can be so helpful with much information, and support from other parents and patients. I wish you and your daughter the best. Let us know what you find out.

Stacey

hopesiris · Jan 17, 2008