Lexi is not getting well, so frustrating.

hmw · Dec 9, 2009

I agree with the others w/ looking into the asthma component since she has such a continuous cough w/o other signs of illness. It is very common to have an asthma/inflammation aspect to cf, and unfortunately it's also common to have this part of the disease overlooked and/or under-treated. If she has a lot of inflammation, that will really affect how well she is able to clear junk out of her lungs, and make things worse with the bugs she cultures, etc... a nasty vicious cycle. And even with lots of extra vest, etc, the inflammation can keep stuff trapped down there.

We found this to be an issue with Emily as well. She gets over illness faster now since adding inhaled steroids to her daily treatments. She does daily Flovent (inhaler) when well and Pulmacort via neb when congested or sick.

Dragonlady~ I am sure there are tests they can do. However, in our case it was kind of based on symptoms and trial and error. Emily benefited dramatically from oral Prednisone during two consecutive illnesses and had a couple specific symptoms that made them think of her having an asthma component to her cf; then we saw measurable relief when we tried the inhaled steroids. So she didn't have any specific 'testing'.

eta> oh and yes, ruling out allergies is always a good idea too. Emily's allergy testing showed absolutely nothing, except a mild reaction to dust mites (which I think is pretty universal!) so we were pretty confident in what we were treating. We kind of knew that going in; her symptoms never seemed to coincide with a seasonal allergy pattern like my dh or 10 yr old, for example, but we wanted to be sure.

hmw · Dec 9, 2009

I agree with the others w/ looking into the asthma component since she has such a continuous cough w/o other signs of illness. It is very common to have an asthma/inflammation aspect to cf, and unfortunately it's also common to have this part of the disease overlooked and/or under-treated. If she has a lot of inflammation, that will really affect how well she is able to clear junk out of her lungs, and make things worse with the bugs she cultures, etc... a nasty vicious cycle. And even with lots of extra vest, etc, the inflammation can keep stuff trapped down there.

We found this to be an issue with Emily as well. She gets over illness faster now since adding inhaled steroids to her daily treatments. She does daily Flovent (inhaler) when well and Pulmacort via neb when congested or sick.

Dragonlady~ I am sure there are tests they can do. However, in our case it was kind of based on symptoms and trial and error. Emily benefited dramatically from oral Prednisone during two consecutive illnesses and had a couple specific symptoms that made them think of her having an asthma component to her cf; then we saw measurable relief when we tried the inhaled steroids. So she didn't have any specific 'testing'.

eta> oh and yes, ruling out allergies is always a good idea too. Emily's allergy testing showed absolutely nothing, except a mild reaction to dust mites (which I think is pretty universal!) so we were pretty confident in what we were treating. We kind of knew that going in; her symptoms never seemed to coincide with a seasonal allergy pattern like my dh or 10 yr old, for example, but we wanted to be sure.

hmw · Dec 9, 2009

I agree with the others w/ looking into the asthma component since she has such a continuous cough w/o other signs of illness. It is very common to have an asthma/inflammation aspect to cf, and unfortunately it's also common to have this part of the disease overlooked and/or under-treated. If she has a lot of inflammation, that will really affect how well she is able to clear junk out of her lungs, and make things worse with the bugs she cultures, etc... a nasty vicious cycle. And even with lots of extra vest, etc, the inflammation can keep stuff trapped down there.

We found this to be an issue with Emily as well. She gets over illness faster now since adding inhaled steroids to her daily treatments. She does daily Flovent (inhaler) when well and Pulmacort via neb when congested or sick.

Dragonlady~ I am sure there are tests they can do. However, in our case it was kind of based on symptoms and trial and error. Emily benefited dramatically from oral Prednisone during two consecutive illnesses and had a couple specific symptoms that made them think of her having an asthma component to her cf; then we saw measurable relief when we tried the inhaled steroids. So she didn't have any specific 'testing'.

eta> oh and yes, ruling out allergies is always a good idea too. Emily's allergy testing showed absolutely nothing, except a mild reaction to dust mites (which I think is pretty universal!) so we were pretty confident in what we were treating. We kind of knew that going in; her symptoms never seemed to coincide with a seasonal allergy pattern like my dh or 10 yr old, for example, but we wanted to be sure.

hmw · Dec 9, 2009

I agree with the others w/ looking into the asthma component since she has such a continuous cough w/o other signs of illness. It is very common to have an asthma/inflammation aspect to cf, and unfortunately it's also common to have this part of the disease overlooked and/or under-treated. If she has a lot of inflammation, that will really affect how well she is able to clear junk out of her lungs, and make things worse with the bugs she cultures, etc... a nasty vicious cycle. And even with lots of extra vest, etc, the inflammation can keep stuff trapped down there.

We found this to be an issue with Emily as well. She gets over illness faster now since adding inhaled steroids to her daily treatments. She does daily Flovent (inhaler) when well and Pulmacort via neb when congested or sick.

Dragonlady~ I am sure there are tests they can do. However, in our case it was kind of based on symptoms and trial and error. Emily benefited dramatically from oral Prednisone during two consecutive illnesses and had a couple specific symptoms that made them think of her having an asthma component to her cf; then we saw measurable relief when we tried the inhaled steroids. So she didn't have any specific 'testing'.

eta> oh and yes, ruling out allergies is always a good idea too. Emily's allergy testing showed absolutely nothing, except a mild reaction to dust mites (which I think is pretty universal!) so we were pretty confident in what we were treating. We kind of knew that going in; her symptoms never seemed to coincide with a seasonal allergy pattern like my dh or 10 yr old, for example, but we wanted to be sure.

hmw · Dec 9, 2009

I agree with the others w/ looking into the asthma component since she has such a continuous cough w/o other signs of illness. It is very common to have an asthma/inflammation aspect to cf, and unfortunately it's also common to have this part of the disease overlooked and/or under-treated. If she has a lot of inflammation, that will really affect how well she is able to clear junk out of her lungs, and make things worse with the bugs she cultures, etc... a nasty vicious cycle. And even with lots of extra vest, etc, the inflammation can keep stuff trapped down there.
 
 We found this to be an issue with Emily as well. She gets over illness faster now since adding inhaled steroids to her daily treatments. She does daily Flovent (inhaler) when well and Pulmacort via neb when congested or sick.
 
 Dragonlady~ I am sure there are tests they can do. However, in our case it was kind of based on symptoms and trial and error. Emily benefited dramatically from oral Prednisone during two consecutive illnesses and had a couple specific symptoms that made them think of her having an asthma component to her cf; then we saw measurable relief when we tried the inhaled steroids. So she didn't have any specific 'testing'.
 
 eta> oh and yes, ruling out allergies is always a good idea too. Emily's allergy testing showed absolutely nothing, except a mild reaction to dust mites (which I think is pretty universal!) so we were pretty confident in what we were treating. We kind of knew that going in; her symptoms never seemed to coincide with a seasonal allergy pattern like my dh or 10 yr old, for example, but we wanted to be sure.

Mommafirst · Dec 9, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: dragonlady

Is there a test or something to determine if it's also asthma?</end quote></div>

I was suspected to have asthma. They tested it by doing a pft before and after administering albuterol. If the function increases after the albuterol, it indicates an element of asthma. I wish I had a more scientific description, I only vaguely recall seeing the results.

Mommafirst · Dec 9, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: dragonlady

Is there a test or something to determine if it's also asthma?</end quote></div>

I was suspected to have asthma. They tested it by doing a pft before and after administering albuterol. If the function increases after the albuterol, it indicates an element of asthma. I wish I had a more scientific description, I only vaguely recall seeing the results.

Mommafirst · Dec 9, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: dragonlady

Is there a test or something to determine if it's also asthma?</end quote></div>

I was suspected to have asthma. They tested it by doing a pft before and after administering albuterol. If the function increases after the albuterol, it indicates an element of asthma. I wish I had a more scientific description, I only vaguely recall seeing the results.

Mommafirst · Dec 9, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: dragonlady

Is there a test or something to determine if it's also asthma?</end quote>

I was suspected to have asthma. They tested it by doing a pft before and after administering albuterol. If the function increases after the albuterol, it indicates an element of asthma. I wish I had a more scientific description, I only vaguely recall seeing the results.

Mommafirst · Dec 9, 2009

<div class="FTQUOTE"><begin quote>Originally posted by: dragonlady
 
 Is there a test or something to determine if it's also asthma?</end quote>
 
 I was suspected to have asthma. They tested it by doing a pft before and after administering albuterol. If the function increases after the albuterol, it indicates an element of asthma. I wish I had a more scientific description, I only vaguely recall seeing the results.

hmw · Dec 9, 2009

I know what test you are talking about, although I can't remember what it's called either. Is this test as accurate for those with CF as it would be for the general population?

I'm asking because most people with CF need a bronchodilator like Albuteral regardless of whether or not they have a strong asthma component to their cf or not so I wonder if the pft change there would be an accurate indicator. *curious now about this*

hmw · Dec 9, 2009

I know what test you are talking about, although I can't remember what it's called either. Is this test as accurate for those with CF as it would be for the general population?

I'm asking because most people with CF need a bronchodilator like Albuteral regardless of whether or not they have a strong asthma component to their cf or not so I wonder if the pft change there would be an accurate indicator. *curious now about this*

hmw · Dec 9, 2009

I know what test you are talking about, although I can't remember what it's called either. Is this test as accurate for those with CF as it would be for the general population?

I'm asking because most people with CF need a bronchodilator like Albuteral regardless of whether or not they have a strong asthma component to their cf or not so I wonder if the pft change there would be an accurate indicator. *curious now about this*

hmw · Dec 9, 2009

I know what test you are talking about, although I can't remember what it's called either. Is this test as accurate for those with CF as it would be for the general population?

I'm asking because most people with CF need a bronchodilator like Albuteral regardless of whether or not they have a strong asthma component to their cf or not so I wonder if the pft change there would be an accurate indicator. *curious now about this*

hmw · Dec 9, 2009

I know what test you are talking about, although I can't remember what it's called either. Is this test as accurate for those with CF as it would be for the general population?
 
 I'm asking because most people with CF need a bronchodilator like Albuteral regardless of whether or not they have a strong asthma component to their cf or not so I wonder if the pft change there would be an accurate indicator. *curious now about this*

Nightwriter · Dec 9, 2009

I've been asked by someone to comment on this thread so here goes...

This is what I've learned from my doctor who has changed the course of my disease drastically.

ANYONE who is taking a bronchodilator has asthma. Whether it has been officially diagnosed or not. Bronchodilators treat asthma. They reduce the swelling in the airways.

BUT, all the medicines in the world cannot compbat an environment that is full of triggers that cause inflammation.

I remember Lexi was exposed to heavy fragrance on a daily basis. This is not an allergy, but a chemical sensitivity which operates similarly in the body. It causes inflammation that swells the lining of the airways. This can cause constant coughing, hoarseness (as mucus drips down from the sinuses which also get inflammed).

If a child is running around with shortness of breath, it can from asthma without infection. AND if the airways remain swollen, it traps bacteria with Pseudomonas or other bacterias which lead to infections. Also inflammation is a breeding ground for infection.

IN the case the culture IS picking up bacterias and mold. Are they treating the mold?

There was a time in my life I would get sick over and over again requiring oral, IV's, inhaled antibiotics. I haven't been on IV meds in 12 years. My last 3 cultures aren't picking up the usual 4 strains of moderated to heavy growth of PA or MRSSA.

Asthma testing is no different for a CF patient. It can be picked up in Pulmonary Function Tests with pre and post bronchodilaors. 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.

Allergy skin testing (food and environment) should be done in addition to IGe levels which can also indicate if someone is an "allergy person" and can help point to chemical sensitivities also if it is greatly elevated but no allergies exist.

I have written a lot on this subject and you can do a search of asthma, inflammation, chemical sensitivities, allegies, etc. and my name and there is a lot of information on these topics.

Nightwriter · Dec 9, 2009

I've been asked by someone to comment on this thread so here goes...

This is what I've learned from my doctor who has changed the course of my disease drastically.

ANYONE who is taking a bronchodilator has asthma. Whether it has been officially diagnosed or not. Bronchodilators treat asthma. They reduce the swelling in the airways.

BUT, all the medicines in the world cannot compbat an environment that is full of triggers that cause inflammation.

I remember Lexi was exposed to heavy fragrance on a daily basis. This is not an allergy, but a chemical sensitivity which operates similarly in the body. It causes inflammation that swells the lining of the airways. This can cause constant coughing, hoarseness (as mucus drips down from the sinuses which also get inflammed).

If a child is running around with shortness of breath, it can from asthma without infection. AND if the airways remain swollen, it traps bacteria with Pseudomonas or other bacterias which lead to infections. Also inflammation is a breeding ground for infection.

IN the case the culture IS picking up bacterias and mold. Are they treating the mold?

There was a time in my life I would get sick over and over again requiring oral, IV's, inhaled antibiotics. I haven't been on IV meds in 12 years. My last 3 cultures aren't picking up the usual 4 strains of moderated to heavy growth of PA or MRSSA.

Asthma testing is no different for a CF patient. It can be picked up in Pulmonary Function Tests with pre and post bronchodilaors. 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.

Allergy skin testing (food and environment) should be done in addition to IGe levels which can also indicate if someone is an "allergy person" and can help point to chemical sensitivities also if it is greatly elevated but no allergies exist.

I have written a lot on this subject and you can do a search of asthma, inflammation, chemical sensitivities, allegies, etc. and my name and there is a lot of information on these topics.

Nightwriter · Dec 9, 2009

I've been asked by someone to comment on this thread so here goes...

This is what I've learned from my doctor who has changed the course of my disease drastically.

ANYONE who is taking a bronchodilator has asthma. Whether it has been officially diagnosed or not. Bronchodilators treat asthma. They reduce the swelling in the airways.

BUT, all the medicines in the world cannot compbat an environment that is full of triggers that cause inflammation.

I remember Lexi was exposed to heavy fragrance on a daily basis. This is not an allergy, but a chemical sensitivity which operates similarly in the body. It causes inflammation that swells the lining of the airways. This can cause constant coughing, hoarseness (as mucus drips down from the sinuses which also get inflammed).

If a child is running around with shortness of breath, it can from asthma without infection. AND if the airways remain swollen, it traps bacteria with Pseudomonas or other bacterias which lead to infections. Also inflammation is a breeding ground for infection.

IN the case the culture IS picking up bacterias and mold. Are they treating the mold?

There was a time in my life I would get sick over and over again requiring oral, IV's, inhaled antibiotics. I haven't been on IV meds in 12 years. My last 3 cultures aren't picking up the usual 4 strains of moderated to heavy growth of PA or MRSSA.

Asthma testing is no different for a CF patient. It can be picked up in Pulmonary Function Tests with pre and post bronchodilaors. 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.

Allergy skin testing (food and environment) should be done in addition to IGe levels which can also indicate if someone is an "allergy person" and can help point to chemical sensitivities also if it is greatly elevated but no allergies exist.

I have written a lot on this subject and you can do a search of asthma, inflammation, chemical sensitivities, allegies, etc. and my name and there is a lot of information on these topics.

Nightwriter · Dec 9, 2009

I've been asked by someone to comment on this thread so here goes...

This is what I've learned from my doctor who has changed the course of my disease drastically.

ANYONE who is taking a bronchodilator has asthma. Whether it has been officially diagnosed or not. Bronchodilators treat asthma. They reduce the swelling in the airways.

BUT, all the medicines in the world cannot compbat an environment that is full of triggers that cause inflammation.

I remember Lexi was exposed to heavy fragrance on a daily basis. This is not an allergy, but a chemical sensitivity which operates similarly in the body. It causes inflammation that swells the lining of the airways. This can cause constant coughing, hoarseness (as mucus drips down from the sinuses which also get inflammed).

If a child is running around with shortness of breath, it can from asthma without infection. AND if the airways remain swollen, it traps bacteria with Pseudomonas or other bacterias which lead to infections. Also inflammation is a breeding ground for infection.

IN the case the culture IS picking up bacterias and mold. Are they treating the mold?

There was a time in my life I would get sick over and over again requiring oral, IV's, inhaled antibiotics. I haven't been on IV meds in 12 years. My last 3 cultures aren't picking up the usual 4 strains of moderated to heavy growth of PA or MRSSA.

Asthma testing is no different for a CF patient. It can be picked up in Pulmonary Function Tests with pre and post bronchodilaors. 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.

Allergy skin testing (food and environment) should be done in addition to IGe levels which can also indicate if someone is an "allergy person" and can help point to chemical sensitivities also if it is greatly elevated but no allergies exist.

I have written a lot on this subject and you can do a search of asthma, inflammation, chemical sensitivities, allegies, etc. and my name and there is a lot of information on these topics.

Nightwriter · Dec 9, 2009

I've been asked by someone to comment on this thread so here goes...
 
 This is what I've learned from my doctor who has changed the course of my disease drastically.
 
 ANYONE who is taking a bronchodilator has asthma. Whether it has been officially diagnosed or not. Bronchodilators treat asthma. They reduce the swelling in the airways.
 
 BUT, all the medicines in the world cannot compbat an environment that is full of triggers that cause inflammation.
 
 I remember Lexi was exposed to heavy fragrance on a daily basis. This is not an allergy, but a chemical sensitivity which operates similarly in the body. It causes inflammation that swells the lining of the airways. This can cause constant coughing, hoarseness (as mucus drips down from the sinuses which also get inflammed).
 
 If a child is running around with shortness of breath, it can from asthma without infection. AND if the airways remain swollen, it traps bacteria with Pseudomonas or other bacterias which lead to infections. Also inflammation is a breeding ground for infection.
 
 IN the case the culture IS picking up bacterias and mold. Are they treating the mold?
 
 There was a time in my life I would get sick over and over again requiring oral, IV's, inhaled antibiotics. I haven't been on IV meds in 12 years. My last 3 cultures aren't picking up the usual 4 strains of moderated to heavy growth of PA or MRSSA.
 
 Asthma testing is no different for a CF patient. It can be picked up in Pulmonary Function Tests with pre and post bronchodilaors. 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.
 
 Allergy skin testing (food and environment) should be done in addition to IGe levels which can also indicate if someone is an "allergy person" and can help point to chemical sensitivities also if it is greatly elevated but no allergies exist.
 
 I have written a lot on this subject and you can do a search of asthma, inflammation, chemical sensitivities, allegies, etc. and my name and there is a lot of information on these topics.

Lexi is not getting well, so frustrating.

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