Very confused

[amyr]

We are still waiting for the delition test(it was only done on me). They sent the kids to genzyme and they don't do the delition testing. Their Dr. is waiting for my results to come in and I guess after that he will do the delition testing on them.

We went to a new allergist today per the pulmanologist. My son's pft was 67%. The allergist wanted to double his flovent and is calling it asthma. My son has no wheezing and his symptoms were no different than they always are. He always has alot of mucus in his chest. We have always assumed everything was asthma and allergies. We all have allergies but symptoms are no different on allergy meds.(itchy eyes and itchy nose improve but that's it.) How do you tell the difference??

This rollercoaster of do they have cf or do they not is way too much. Now the allergist wants them all to have repeat sweats. I can't deal with one more conflicting opinion. The allergist doesn't nor has he ever treated cf. I think that seeing him today just confused me even more. I asked if allergies would cause recurrent pnemonia he said NO WAY. My daughter has had it 5 times and she is 6. I am once again at a loss!!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[amyr]

We are still waiting for the delition test(it was only done on me). They sent the kids to genzyme and they don't do the delition testing. Their Dr. is waiting for my results to come in and I guess after that he will do the delition testing on them.

We went to a new allergist today per the pulmanologist. My son's pft was 67%. The allergist wanted to double his flovent and is calling it asthma. My son has no wheezing and his symptoms were no different than they always are. He always has alot of mucus in his chest. We have always assumed everything was asthma and allergies. We all have allergies but symptoms are no different on allergy meds.(itchy eyes and itchy nose improve but that's it.) How do you tell the difference??

This rollercoaster of do they have cf or do they not is way too much. Now the allergist wants them all to have repeat sweats. I can't deal with one more conflicting opinion. The allergist doesn't nor has he ever treated cf. I think that seeing him today just confused me even more. I asked if allergies would cause recurrent pnemonia he said NO WAY. My daughter has had it 5 times and she is 6. I am once again at a loss!!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[amyr]

We are still waiting for the delition test(it was only done on me). They sent the kids to genzyme and they don't do the delition testing. Their Dr. is waiting for my results to come in and I guess after that he will do the delition testing on them.

We went to a new allergist today per the pulmanologist. My son's pft was 67%. The allergist wanted to double his flovent and is calling it asthma. My son has no wheezing and his symptoms were no different than they always are. He always has alot of mucus in his chest. We have always assumed everything was asthma and allergies. We all have allergies but symptoms are no different on allergy meds.(itchy eyes and itchy nose improve but that's it.) How do you tell the difference??

This rollercoaster of do they have cf or do they not is way too much. Now the allergist wants them all to have repeat sweats. I can't deal with one more conflicting opinion. The allergist doesn't nor has he ever treated cf. I think that seeing him today just confused me even more. I asked if allergies would cause recurrent pnemonia he said NO WAY. My daughter has had it 5 times and she is 6. I am once again at a loss!!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[amyr]

We are still waiting for the delition test(it was only done on me). They sent the kids to genzyme and they don't do the delition testing. Their Dr. is waiting for my results to come in and I guess after that he will do the delition testing on them.

We went to a new allergist today per the pulmanologist. My son's pft was 67%. The allergist wanted to double his flovent and is calling it asthma. My son has no wheezing and his symptoms were no different than they always are. He always has alot of mucus in his chest. We have always assumed everything was asthma and allergies. We all have allergies but symptoms are no different on allergy meds.(itchy eyes and itchy nose improve but that's it.) How do you tell the difference??

This rollercoaster of do they have cf or do they not is way too much. Now the allergist wants them all to have repeat sweats. I can't deal with one more conflicting opinion. The allergist doesn't nor has he ever treated cf. I think that seeing him today just confused me even more. I asked if allergies would cause recurrent pnemonia he said NO WAY. My daughter has had it 5 times and she is 6. I am once again at a loss!!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[amyr]

We are still waiting for the delition test(it was only done on me). They sent the kids to genzyme and they don't do the delition testing. Their Dr. is waiting for my results to come in and I guess after that he will do the delition testing on them.
<br />
<br />We went to a new allergist today per the pulmanologist. My son's pft was 67%. The allergist wanted to double his flovent and is calling it asthma. My son has no wheezing and his symptoms were no different than they always are. He always has alot of mucus in his chest. We have always assumed everything was asthma and allergies. We all have allergies but symptoms are no different on allergy meds.(itchy eyes and itchy nose improve but that's it.) How do you tell the difference??
<br />
<br />This rollercoaster of do they have cf or do they not is way too much. Now the allergist wants them all to have repeat sweats. I can't deal with one more conflicting opinion. The allergist doesn't nor has he ever treated cf. I think that seeing him today just confused me even more. I asked if allergies would cause recurrent pnemonia he said NO WAY. My daughter has had it 5 times and she is 6. I am once again at a loss!!<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[hopesiris]

What happens with CF is that "bugs" live in the lungs. The excess mucus that already is in there from CF is increased when bugs are present. The lungs become a good place for secondary infections to grow, which leads to repeated bronchitis and pneumonia. Bugs usually can't survive in non CF lungs because the body fights them off. Sputum cultures (or whatever they do in kids) should show if there are any bugs. I'm guessing it's possible for child CFers to not have bugs yet because I only culture for one so far and I have no lung damage from it yet (that means I likely haven't had it for many years).

Asthma can reduce PFT's, mine is 82% after having a baby but the highest it was even in my 20's (pre-diagnosis) was 89%. A PFT of 67% is cause for concern and you are absolutely right to take what the allergist is saying to be what it is - the opinion of someone who is not trained to diagnose or treat CF. I'd politely let the allergist know that your child is under the care of a CF specialist and that you were only referred for allergy treatment.

If it helps, I went to see an ENT recently who also sees CF patients. He said I don't look like a typical CFer. He also suggested I do allergy shots and said my symptoms might lessen (they won't, I did allergy shots in the past and allergy meds don't stop my mucus flow). When I told him none of that helps he said that there is nothing that will stop CF mucus flow but all you can do is manage as best you can. Some CF patients benefit from allergy treatment and some don't.

I think you are understanding what is being done and why very well. Don't let that allergist throw you for a loop. <img src="i/expressions/heart.gif" border="0">

Bonnie

 

[hopesiris]

What happens with CF is that "bugs" live in the lungs. The excess mucus that already is in there from CF is increased when bugs are present. The lungs become a good place for secondary infections to grow, which leads to repeated bronchitis and pneumonia. Bugs usually can't survive in non CF lungs because the body fights them off. Sputum cultures (or whatever they do in kids) should show if there are any bugs. I'm guessing it's possible for child CFers to not have bugs yet because I only culture for one so far and I have no lung damage from it yet (that means I likely haven't had it for many years).

Asthma can reduce PFT's, mine is 82% after having a baby but the highest it was even in my 20's (pre-diagnosis) was 89%. A PFT of 67% is cause for concern and you are absolutely right to take what the allergist is saying to be what it is - the opinion of someone who is not trained to diagnose or treat CF. I'd politely let the allergist know that your child is under the care of a CF specialist and that you were only referred for allergy treatment.

If it helps, I went to see an ENT recently who also sees CF patients. He said I don't look like a typical CFer. He also suggested I do allergy shots and said my symptoms might lessen (they won't, I did allergy shots in the past and allergy meds don't stop my mucus flow). When I told him none of that helps he said that there is nothing that will stop CF mucus flow but all you can do is manage as best you can. Some CF patients benefit from allergy treatment and some don't.

I think you are understanding what is being done and why very well. Don't let that allergist throw you for a loop. <img src="i/expressions/heart.gif" border="0">

Bonnie

 

[hopesiris]

What happens with CF is that "bugs" live in the lungs. The excess mucus that already is in there from CF is increased when bugs are present. The lungs become a good place for secondary infections to grow, which leads to repeated bronchitis and pneumonia. Bugs usually can't survive in non CF lungs because the body fights them off. Sputum cultures (or whatever they do in kids) should show if there are any bugs. I'm guessing it's possible for child CFers to not have bugs yet because I only culture for one so far and I have no lung damage from it yet (that means I likely haven't had it for many years).

Asthma can reduce PFT's, mine is 82% after having a baby but the highest it was even in my 20's (pre-diagnosis) was 89%. A PFT of 67% is cause for concern and you are absolutely right to take what the allergist is saying to be what it is - the opinion of someone who is not trained to diagnose or treat CF. I'd politely let the allergist know that your child is under the care of a CF specialist and that you were only referred for allergy treatment.

If it helps, I went to see an ENT recently who also sees CF patients. He said I don't look like a typical CFer. He also suggested I do allergy shots and said my symptoms might lessen (they won't, I did allergy shots in the past and allergy meds don't stop my mucus flow). When I told him none of that helps he said that there is nothing that will stop CF mucus flow but all you can do is manage as best you can. Some CF patients benefit from allergy treatment and some don't.

I think you are understanding what is being done and why very well. Don't let that allergist throw you for a loop. <img src="i/expressions/heart.gif" border="0">

Bonnie

 

[hopesiris]

What happens with CF is that "bugs" live in the lungs. The excess mucus that already is in there from CF is increased when bugs are present. The lungs become a good place for secondary infections to grow, which leads to repeated bronchitis and pneumonia. Bugs usually can't survive in non CF lungs because the body fights them off. Sputum cultures (or whatever they do in kids) should show if there are any bugs. I'm guessing it's possible for child CFers to not have bugs yet because I only culture for one so far and I have no lung damage from it yet (that means I likely haven't had it for many years).

Asthma can reduce PFT's, mine is 82% after having a baby but the highest it was even in my 20's (pre-diagnosis) was 89%. A PFT of 67% is cause for concern and you are absolutely right to take what the allergist is saying to be what it is - the opinion of someone who is not trained to diagnose or treat CF. I'd politely let the allergist know that your child is under the care of a CF specialist and that you were only referred for allergy treatment.

If it helps, I went to see an ENT recently who also sees CF patients. He said I don't look like a typical CFer. He also suggested I do allergy shots and said my symptoms might lessen (they won't, I did allergy shots in the past and allergy meds don't stop my mucus flow). When I told him none of that helps he said that there is nothing that will stop CF mucus flow but all you can do is manage as best you can. Some CF patients benefit from allergy treatment and some don't.

I think you are understanding what is being done and why very well. Don't let that allergist throw you for a loop. <img src="i/expressions/heart.gif" border="0">

Bonnie

 

[hopesiris]

What happens with CF is that "bugs" live in the lungs. The excess mucus that already is in there from CF is increased when bugs are present. The lungs become a good place for secondary infections to grow, which leads to repeated bronchitis and pneumonia. Bugs usually can't survive in non CF lungs because the body fights them off. Sputum cultures (or whatever they do in kids) should show if there are any bugs. I'm guessing it's possible for child CFers to not have bugs yet because I only culture for one so far and I have no lung damage from it yet (that means I likely haven't had it for many years).
<br />
<br />Asthma can reduce PFT's, mine is 82% after having a baby but the highest it was even in my 20's (pre-diagnosis) was 89%. A PFT of 67% is cause for concern and you are absolutely right to take what the allergist is saying to be what it is - the opinion of someone who is not trained to diagnose or treat CF. I'd politely let the allergist know that your child is under the care of a CF specialist and that you were only referred for allergy treatment.
<br />
<br />If it helps, I went to see an ENT recently who also sees CF patients. He said I don't look like a typical CFer. He also suggested I do allergy shots and said my symptoms might lessen (they won't, I did allergy shots in the past and allergy meds don't stop my mucus flow). When I told him none of that helps he said that there is nothing that will stop CF mucus flow but all you can do is manage as best you can. Some CF patients benefit from allergy treatment and some don't.
<br />
<br />I think you are understanding what is being done and why very well. Don't let that allergist throw you for a loop. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Bonnie

 

[amyr]

I have been saying this for years allergy meds don't work for us!!! We both did shots and they actually made me feel worse. The only improvement we see is itchy eyes and itchy nose NOTHING ELSE none of us have ever been mucus free. I think with cases like my family (every test comes back in the grey area) they just don't know what to do with us. I do feel as if we are running in a million different directions with no end in sight.

 

[amyr]

I have been saying this for years allergy meds don't work for us!!! We both did shots and they actually made me feel worse. The only improvement we see is itchy eyes and itchy nose NOTHING ELSE none of us have ever been mucus free. I think with cases like my family (every test comes back in the grey area) they just don't know what to do with us. I do feel as if we are running in a million different directions with no end in sight.

 

[amyr]

I have been saying this for years allergy meds don't work for us!!! We both did shots and they actually made me feel worse. The only improvement we see is itchy eyes and itchy nose NOTHING ELSE none of us have ever been mucus free. I think with cases like my family (every test comes back in the grey area) they just don't know what to do with us. I do feel as if we are running in a million different directions with no end in sight.

 

[amyr]

I have been saying this for years allergy meds don't work for us!!! We both did shots and they actually made me feel worse. The only improvement we see is itchy eyes and itchy nose NOTHING ELSE none of us have ever been mucus free. I think with cases like my family (every test comes back in the grey area) they just don't know what to do with us. I do feel as if we are running in a million different directions with no end in sight.

 

[amyr]

I have been saying this for years allergy meds don't work for us!!! We both did shots and they actually made me feel worse. The only improvement we see is itchy eyes and itchy nose NOTHING ELSE none of us have ever been mucus free. I think with cases like my family (every test comes back in the grey area) they just don't know what to do with us. I do feel as if we are running in a million different directions with no end in sight.

 

[hopesiris]

It takes a while to get through all the initial testing, then there's the whole coming to terms with diagnosis thing. Atypical cases are generally treated less aggressively unless the disease has progressed, so you should settle into a routine once you get your vests and stuff. I am only supposed to see my CF doc once or twice a year unless I am sick.
If you are diagnosed too after your Ambry comes back, the Adults board is a great place to get support. The Pregnancy board has CF moms with young children (most do not have CF though) so you could always stop by if parenting while caring for yourself becomes a challenge.
Just a reminder: When you go to the clinic make sure the kids know not to touch things or go near other people in the waiting room. Bring Purell.

 

[hopesiris]

It takes a while to get through all the initial testing, then there's the whole coming to terms with diagnosis thing. Atypical cases are generally treated less aggressively unless the disease has progressed, so you should settle into a routine once you get your vests and stuff. I am only supposed to see my CF doc once or twice a year unless I am sick.
If you are diagnosed too after your Ambry comes back, the Adults board is a great place to get support. The Pregnancy board has CF moms with young children (most do not have CF though) so you could always stop by if parenting while caring for yourself becomes a challenge.
Just a reminder: When you go to the clinic make sure the kids know not to touch things or go near other people in the waiting room. Bring Purell.

 

[hopesiris]

It takes a while to get through all the initial testing, then there's the whole coming to terms with diagnosis thing. Atypical cases are generally treated less aggressively unless the disease has progressed, so you should settle into a routine once you get your vests and stuff. I am only supposed to see my CF doc once or twice a year unless I am sick.
If you are diagnosed too after your Ambry comes back, the Adults board is a great place to get support. The Pregnancy board has CF moms with young children (most do not have CF though) so you could always stop by if parenting while caring for yourself becomes a challenge.
Just a reminder: When you go to the clinic make sure the kids know not to touch things or go near other people in the waiting room. Bring Purell.

 

[hopesiris]

It takes a while to get through all the initial testing, then there's the whole coming to terms with diagnosis thing. Atypical cases are generally treated less aggressively unless the disease has progressed, so you should settle into a routine once you get your vests and stuff. I am only supposed to see my CF doc once or twice a year unless I am sick.
If you are diagnosed too after your Ambry comes back, the Adults board is a great place to get support. The Pregnancy board has CF moms with young children (most do not have CF though) so you could always stop by if parenting while caring for yourself becomes a challenge.
Just a reminder: When you go to the clinic make sure the kids know not to touch things or go near other people in the waiting room. Bring Purell.

 

[hopesiris]

It takes a while to get through all the initial testing, then there's the whole coming to terms with diagnosis thing. Atypical cases are generally treated less aggressively unless the disease has progressed, so you should settle into a routine once you get your vests and stuff. I am only supposed to see my CF doc once or twice a year unless I am sick.
<br />If you are diagnosed too after your Ambry comes back, the Adults board is a great place to get support. The Pregnancy board has CF moms with young children (most do not have CF though) so you could always stop by if parenting while caring for yourself becomes a challenge.
<br />Just a reminder: When you go to the clinic make sure the kids know not to touch things or go near other people in the waiting room. Bring Purell.