Lexi is not getting well, so frustrating.

[hmw]

Thank you so much for posting Nightwriter. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had no idea if the testing would be the same and the posts about it had made me wonder about it. (I feel silly sometimes asking all the questions that come to my mind but I'll never know without asking.)

<div class="FTQUOTE"><begin quote>Asthma is NOT always picked up in tests either. Sometimes if there is a certain trigger, the asthma may only occur in the presence of that trigger -- so the test might not pick it up. But it is the place to start.</end quote></div>
I can believe this. I don't have cf, but I did struggle with some asthma for a period of time when I was a kid. It was not all the time, though; it was deemed allergy-induced asthma but was also often triggered under even more specific conditions than that- exposure to the allergen PLUS certain weather (when it was humid.) So sitting in an air-filtered, air-conditioned doctor's office might not have done me much good when it came to trying to dx me. (To be honest I have little recollection of what they did to dx me other than allergy testing. All those needles were what stand out in my childhood memories haha.) Fortunately whatever they did do helped accurately dx me and I went on a combination of a daily allergy med and a bronchodilator as needed.

I definitely would want to look into potential triggers in Lexi's environment that could be causing this kind of response.

 

[hmw]

Thank you so much for posting Nightwriter. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had no idea if the testing would be the same and the posts about it had made me wonder about it. (I feel silly sometimes asking all the questions that come to my mind but I'll never know without asking.)

<div class="FTQUOTE"><begin quote>Asthma is NOT always picked up in tests either. Sometimes if there is a certain trigger, the asthma may only occur in the presence of that trigger -- so the test might not pick it up. But it is the place to start.</end quote></div>
I can believe this. I don't have cf, but I did struggle with some asthma for a period of time when I was a kid. It was not all the time, though; it was deemed allergy-induced asthma but was also often triggered under even more specific conditions than that- exposure to the allergen PLUS certain weather (when it was humid.) So sitting in an air-filtered, air-conditioned doctor's office might not have done me much good when it came to trying to dx me. (To be honest I have little recollection of what they did to dx me other than allergy testing. All those needles were what stand out in my childhood memories haha.) Fortunately whatever they did do helped accurately dx me and I went on a combination of a daily allergy med and a bronchodilator as needed.

I definitely would want to look into potential triggers in Lexi's environment that could be causing this kind of response.

 

[hmw]

Thank you so much for posting Nightwriter. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had no idea if the testing would be the same and the posts about it had made me wonder about it. (I feel silly sometimes asking all the questions that come to my mind but I'll never know without asking.)

<div class="FTQUOTE"><begin quote>Asthma is NOT always picked up in tests either. Sometimes if there is a certain trigger, the asthma may only occur in the presence of that trigger -- so the test might not pick it up. But it is the place to start.</end quote></div>
I can believe this. I don't have cf, but I did struggle with some asthma for a period of time when I was a kid. It was not all the time, though; it was deemed allergy-induced asthma but was also often triggered under even more specific conditions than that- exposure to the allergen PLUS certain weather (when it was humid.) So sitting in an air-filtered, air-conditioned doctor's office might not have done me much good when it came to trying to dx me. (To be honest I have little recollection of what they did to dx me other than allergy testing. All those needles were what stand out in my childhood memories haha.) Fortunately whatever they did do helped accurately dx me and I went on a combination of a daily allergy med and a bronchodilator as needed.

I definitely would want to look into potential triggers in Lexi's environment that could be causing this kind of response.

 

[hmw]

Thank you so much for posting Nightwriter. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had no idea if the testing would be the same and the posts about it had made me wonder about it. (I feel silly sometimes asking all the questions that come to my mind but I'll never know without asking.)

<div class="FTQUOTE"><begin quote>Asthma is NOT always picked up in tests either. Sometimes if there is a certain trigger, the asthma may only occur in the presence of that trigger -- so the test might not pick it up. But it is the place to start.</end quote>
I can believe this. I don't have cf, but I did struggle with some asthma for a period of time when I was a kid. It was not all the time, though; it was deemed allergy-induced asthma but was also often triggered under even more specific conditions than that- exposure to the allergen PLUS certain weather (when it was humid.) So sitting in an air-filtered, air-conditioned doctor's office might not have done me much good when it came to trying to dx me. (To be honest I have little recollection of what they did to dx me other than allergy testing. All those needles were what stand out in my childhood memories haha.) Fortunately whatever they did do helped accurately dx me and I went on a combination of a daily allergy med and a bronchodilator as needed.

I definitely would want to look into potential triggers in Lexi's environment that could be causing this kind of response.

 

[hmw]

Thank you so much for posting Nightwriter. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I had no idea if the testing would be the same and the posts about it had made me wonder about it. (I feel silly sometimes asking all the questions that come to my mind but I'll never know without asking.)
<br />
<br /><div class="FTQUOTE"><begin quote>Asthma is NOT always picked up in tests either. Sometimes if there is a certain trigger, the asthma may only occur in the presence of that trigger -- so the test might not pick it up. But it is the place to start.</end quote>
<br />I can believe this. I don't have cf, but I did struggle with some asthma for a period of time when I was a kid. It was not all the time, though; it was deemed allergy-induced asthma but was also often triggered under even more specific conditions than that- exposure to the allergen PLUS certain weather (when it was humid.) So sitting in an air-filtered, air-conditioned doctor's office might not have done me much good when it came to trying to dx me. (To be honest I have little recollection of what they did to dx me other than allergy testing. All those needles were what stand out in my childhood memories haha.) Fortunately whatever they did do helped accurately dx me and I went on a combination of a daily allergy med and a bronchodilator as needed.
<br />
<br />I definitely would want to look into potential triggers in Lexi's environment that could be causing this kind of response.

 

[Nightwriter]

Harriet,

Asking questions is a good thing, especially since much of what I talk about is not in the literature and when it comes to environmental effects on CF, doctors are not always reading what IS available.

What you say is true --- about testing in a clean, air conditioned office. My doctor has told me that some humidity is good for the lungs, it is not good when the location is in a place where there is lots of greenery (with places like Florida being the worst). Why? Because the humidity triggers mold in the air which as you know is NOT good. So that is a large part of why humid climates made you feel worse. (There are a few other factors also).

On the other hand, the air at the beach is very healthy (no trees). Climates like the coast of Northern Califonia are very good for respiratory patients.

Also when testing for asthma, there are many people who have exercise induced asthma, so they are tested by either running on a treadmill or running up and down stairs.

I know my doctor does not test babies or todlers for asthma, because they are not going to sit still for the skin pricks. Above the age of 5, my doctor said most kids perceive the skin pricks as tickling.

However whether one is tested or not, everyone must make their environement as allergy and chemical free as possible and eat healthy chemical, dye free food, no refined sugar
use charcoal/hepa air filters and vacuums and so on.

 

[Nightwriter]

Harriet,

Asking questions is a good thing, especially since much of what I talk about is not in the literature and when it comes to environmental effects on CF, doctors are not always reading what IS available.

What you say is true --- about testing in a clean, air conditioned office. My doctor has told me that some humidity is good for the lungs, it is not good when the location is in a place where there is lots of greenery (with places like Florida being the worst). Why? Because the humidity triggers mold in the air which as you know is NOT good. So that is a large part of why humid climates made you feel worse. (There are a few other factors also).

On the other hand, the air at the beach is very healthy (no trees). Climates like the coast of Northern Califonia are very good for respiratory patients.

Also when testing for asthma, there are many people who have exercise induced asthma, so they are tested by either running on a treadmill or running up and down stairs.

I know my doctor does not test babies or todlers for asthma, because they are not going to sit still for the skin pricks. Above the age of 5, my doctor said most kids perceive the skin pricks as tickling.

However whether one is tested or not, everyone must make their environement as allergy and chemical free as possible and eat healthy chemical, dye free food, no refined sugar
use charcoal/hepa air filters and vacuums and so on.

 

[Nightwriter]

Harriet,

Asking questions is a good thing, especially since much of what I talk about is not in the literature and when it comes to environmental effects on CF, doctors are not always reading what IS available.

What you say is true --- about testing in a clean, air conditioned office. My doctor has told me that some humidity is good for the lungs, it is not good when the location is in a place where there is lots of greenery (with places like Florida being the worst). Why? Because the humidity triggers mold in the air which as you know is NOT good. So that is a large part of why humid climates made you feel worse. (There are a few other factors also).

On the other hand, the air at the beach is very healthy (no trees). Climates like the coast of Northern Califonia are very good for respiratory patients.

Also when testing for asthma, there are many people who have exercise induced asthma, so they are tested by either running on a treadmill or running up and down stairs.

I know my doctor does not test babies or todlers for asthma, because they are not going to sit still for the skin pricks. Above the age of 5, my doctor said most kids perceive the skin pricks as tickling.

However whether one is tested or not, everyone must make their environement as allergy and chemical free as possible and eat healthy chemical, dye free food, no refined sugar
use charcoal/hepa air filters and vacuums and so on.

 

[Nightwriter]

Harriet,

Asking questions is a good thing, especially since much of what I talk about is not in the literature and when it comes to environmental effects on CF, doctors are not always reading what IS available.

What you say is true --- about testing in a clean, air conditioned office. My doctor has told me that some humidity is good for the lungs, it is not good when the location is in a place where there is lots of greenery (with places like Florida being the worst). Why? Because the humidity triggers mold in the air which as you know is NOT good. So that is a large part of why humid climates made you feel worse. (There are a few other factors also).

On the other hand, the air at the beach is very healthy (no trees). Climates like the coast of Northern Califonia are very good for respiratory patients.

Also when testing for asthma, there are many people who have exercise induced asthma, so they are tested by either running on a treadmill or running up and down stairs.

I know my doctor does not test babies or todlers for asthma, because they are not going to sit still for the skin pricks. Above the age of 5, my doctor said most kids perceive the skin pricks as tickling.

However whether one is tested or not, everyone must make their environement as allergy and chemical free as possible and eat healthy chemical, dye free food, no refined sugar
use charcoal/hepa air filters and vacuums and so on.

 

[Nightwriter]

Harriet,
<br />
<br />Asking questions is a good thing, especially since much of what I talk about is not in the literature and when it comes to environmental effects on CF, doctors are not always reading what IS available.
<br />
<br />What you say is true --- about testing in a clean, air conditioned office. My doctor has told me that some humidity is good for the lungs, it is not good when the location is in a place where there is lots of greenery (with places like Florida being the worst). Why? Because the humidity triggers mold in the air which as you know is NOT good. So that is a large part of why humid climates made you feel worse. (There are a few other factors also).
<br />
<br />On the other hand, the air at the beach is very healthy (no trees). Climates like the coast of Northern Califonia are very good for respiratory patients.
<br />
<br />Also when testing for asthma, there are many people who have exercise induced asthma, so they are tested by either running on a treadmill or running up and down stairs.
<br />
<br />I know my doctor does not test babies or todlers for asthma, because they are not going to sit still for the skin pricks. Above the age of 5, my doctor said most kids perceive the skin pricks as tickling.
<br />
<br />However whether one is tested or not, everyone must make their environement as allergy and chemical free as possible and eat healthy chemical, dye free food, no refined sugar
<br />use charcoal/hepa air filters and vacuums and so on.

 

[LisaGreene]

Hi Melissa,
Sorry to hear Lexi isn't getting better. You mentioned mold. Is this the same as fungus? My daughter Kasey was struggling with a cough not getting better for a long time and it turns out she had aspergillus but such a low level that it did not show ABPA (allergic reaction).

However, we treated her with itracanazol and predisone and her cough finnaly went away afer MONTHS of trying to figure out what was wrong from asthma to GERD to sinuses, etc. So, not sure if this is your case but it's worth asking since you mentioned mold. Our docs weren't going to treat the aspergillus until I asked them to after we tried everything else under the sun. And that's what it ended up being- although she's not allergic to it, it obviously irritates her lungs.

Good luck with this- it's so hard I know. But advocate for her- don't give up!

Hugs,
Lisa

 

[LisaGreene]

Hi Melissa,
Sorry to hear Lexi isn't getting better. You mentioned mold. Is this the same as fungus? My daughter Kasey was struggling with a cough not getting better for a long time and it turns out she had aspergillus but such a low level that it did not show ABPA (allergic reaction).

However, we treated her with itracanazol and predisone and her cough finnaly went away afer MONTHS of trying to figure out what was wrong from asthma to GERD to sinuses, etc. So, not sure if this is your case but it's worth asking since you mentioned mold. Our docs weren't going to treat the aspergillus until I asked them to after we tried everything else under the sun. And that's what it ended up being- although she's not allergic to it, it obviously irritates her lungs.

Good luck with this- it's so hard I know. But advocate for her- don't give up!

Hugs,
Lisa

 

[LisaGreene]

Hi Melissa,
Sorry to hear Lexi isn't getting better. You mentioned mold. Is this the same as fungus? My daughter Kasey was struggling with a cough not getting better for a long time and it turns out she had aspergillus but such a low level that it did not show ABPA (allergic reaction).

However, we treated her with itracanazol and predisone and her cough finnaly went away afer MONTHS of trying to figure out what was wrong from asthma to GERD to sinuses, etc. So, not sure if this is your case but it's worth asking since you mentioned mold. Our docs weren't going to treat the aspergillus until I asked them to after we tried everything else under the sun. And that's what it ended up being- although she's not allergic to it, it obviously irritates her lungs.

Good luck with this- it's so hard I know. But advocate for her- don't give up!

Hugs,
Lisa

 

[LisaGreene]

Hi Melissa,
Sorry to hear Lexi isn't getting better. You mentioned mold. Is this the same as fungus? My daughter Kasey was struggling with a cough not getting better for a long time and it turns out she had aspergillus but such a low level that it did not show ABPA (allergic reaction).

However, we treated her with itracanazol and predisone and her cough finnaly went away afer MONTHS of trying to figure out what was wrong from asthma to GERD to sinuses, etc. So, not sure if this is your case but it's worth asking since you mentioned mold. Our docs weren't going to treat the aspergillus until I asked them to after we tried everything else under the sun. And that's what it ended up being- although she's not allergic to it, it obviously irritates her lungs.

Good luck with this- it's so hard I know. But advocate for her- don't give up!

Hugs,
Lisa

 

[LisaGreene]

Hi Melissa,
<br />Sorry to hear Lexi isn't getting better. You mentioned mold. Is this the same as fungus? My daughter Kasey was struggling with a cough not getting better for a long time and it turns out she had aspergillus but such a low level that it did not show ABPA (allergic reaction).
<br />
<br />However, we treated her with itracanazol and predisone and her cough finnaly went away afer MONTHS of trying to figure out what was wrong from asthma to GERD to sinuses, etc. So, not sure if this is your case but it's worth asking since you mentioned mold. Our docs weren't going to treat the aspergillus until I asked them to after we tried everything else under the sun. And that's what it ended up being- although she's not allergic to it, it obviously irritates her lungs.
<br />
<br />Good luck with this- it's so hard I know. But advocate for her- don't give up!
<br />
<br />Hugs,
<br />Lisa

 

[lexisangels05]

Nightwriter,
Lexi is on Albuterol puffer, Pulmazyme, Tobi, Flovent, Zantac, Zithromax 3 x per week, Septra 2 x per day, and several Vitamins.

Not sure what each antibiotic treats.

 

[lexisangels05]

Nightwriter,
Lexi is on Albuterol puffer, Pulmazyme, Tobi, Flovent, Zantac, Zithromax 3 x per week, Septra 2 x per day, and several Vitamins.

Not sure what each antibiotic treats.

 

[lexisangels05]

Nightwriter,
Lexi is on Albuterol puffer, Pulmazyme, Tobi, Flovent, Zantac, Zithromax 3 x per week, Septra 2 x per day, and several Vitamins.

Not sure what each antibiotic treats.

 

[lexisangels05]

Nightwriter,
Lexi is on Albuterol puffer, Pulmazyme, Tobi, Flovent, Zantac, Zithromax 3 x per week, Septra 2 x per day, and several Vitamins.

Not sure what each antibiotic treats.

 

[lexisangels05]

Nightwriter,
<br />Lexi is on Albuterol puffer, Pulmazyme, Tobi, Flovent, Zantac, Zithromax 3 x per week, Septra 2 x per day, and several Vitamins.
<br />
<br />Not sure what each antibiotic treats.