Re: what to do

[Guest guest]

Thats a tough call. If he did well on the Symbicort, he may very well need to be on it to keep down the inflammation. The next question is how well do you trust your current CF doctor? One of the components to asthma is reactivity. The reactivity generates an inflammatory response that leads to the buildup of the phlegm and mucus which of course narrows the airways both by the inflammation and because of the "gunk". If the doc is willling to do one once you can get some control over the 'asthma' maybe getting him back on Symbicort for some time might be the answer.If it is any consolation, my cousin's boy had asthma wicked bad until xolair came out. At 8 this kid had already been on Adult doses of most of his meds with barely any control. They checked him out for CF too...but fortunately he did not have it. The xolair shots came out and he qualified so they got him on the shots..with awesome results for him. It doesnt work that good for all people, but he went from at least one ER trip/hospitalization/month to 1 in a year. For him, xolair was a miracle drug. Hes 20 now and doing really well in college with minor problems occasionally if he gets sick. So if this is in fact "just" asthma, hold on to the thought that there is hope for improvement....Ann what to do

So my son was on the Bactrim for Staph culture and on Symbicort 160 for "asthma." He got somewhat better after six weeks of abx and his PFTs were up so we took him off Symbicort and put him on QVAR 80. He is still doing albuterol nebs and using a vest for chest clearance, both twice a day. He occasionally has low grade fevers but even more obvious, his really heavy phlegmy cough is back. I am so frustrated, he has been really bad since early February.

We wanted him off the Symbicort since he is only 7 but would your guess be that it helped keep inflammation down and he needs it? Or, could he still be culturing bugs in his lungs? I am still so tempted to ask for a bronchoscopy to figure this out once and for all. It has been recommended to us by two other CF clinics but our CF doctor won't do it now since he seems so reactive. I wouldn't call it reactive, I would call it sick.

I would love some input. I am all out of ideas but hate to see him suffer so much.

[Guest guest]

Hi woman. I think it is well said by Ann. Just my personal opinion, but I would restart the Symbicort to get control then do the bronchoscope. A bronchoscope is no fun, but at least in my case it was invaluable. It provided many answers. I hope your son gets to feeling better soon.MadelineTo:

asthma Sent: Wed, May 4, 2011 6:51:53 AMSubject: RE: what to do

Thats a tough call. If he did well on the Symbicort, he may very well need to be on it to keep down the inflammation. The next question is how well do you trust your current CF doctor? One of the components to asthma is reactivity. The reactivity generates an inflammatory response that leads to the buildup of the phlegm and mucus which of course narrows the airways both by the inflammation and because of the "gunk". If the doc is willling to do one once you can get some control over the 'asthma' maybe getting him back on Symbicort for some time might be the answer.If it is any consolation, my cousin's boy had asthma wicked bad until xolair came out. At 8 this kid had already been on Adult doses of most of his meds with barely any control. They checked him out for CF too...but fortunately he did not have it. The xolair shots came out and he qualified so

they got him on the shots..with awesome results for him. It doesnt work that good for all people, but he went from at least one ER trip/hospitalization/month to 1 in a year. For him, xolair was a miracle drug. Hes 20 now and doing really well in college with minor problems occasionally if he gets sick. So if this is in fact "just" asthma, hold on to the thought that there is hope for improvement....Ann what to do

So my son was on the Bactrim for Staph culture and on Symbicort 160 for "asthma." He got somewhat better after six weeks of abx and his PFTs were up so we took him off Symbicort and put him on QVAR 80. He is still doing albuterol nebs and using a vest for chest clearance, both twice a day. He occasionally has low grade fevers but even more obvious, his really heavy phlegmy cough is back. I am so frustrated, he has been really bad since early February.

We wanted him off the Symbicort since he is only 7 but would your guess be that it helped keep inflammation down and he needs it? Or, could he still be culturing bugs in his lungs? I am still so tempted to ask for a bronchoscopy to figure this out once and for all. It has been recommended to us by two other CF clinics but our CF doctor won't do it now since he seems so reactive. I wouldn't call it reactive, I would call it sick.

I would love some input. I am all out of ideas but hate to see him suffer so much.

[Guest guest]

Thanks ladies,

I appreciate the ideas a lot. To answer the " how well do you trust your CF

doctor? " **not much** It will have to do since we have to stick with her but I

do not think she is aggressive enough at all. But, we need him to be cultured

when he is " sick " and no one else will do that. So we have to tough it out. Just

another quick word on that, there are others who are disgruntled with this same

clinic, they seem to be holding back on treating a lot of people. Owen has CF

variants and multiple polymorphisms which make him complicated to say the least.

Another question I have for you, is how you know asthma is really bad?? I know

it sounds totally crazy. Is is attacks? Peak flows in yellow/red zone? I cannot

tell if it is bad asthma or congestion/infection in his lungs. His peak flows

are fine. His FEV1% went down from 104% (very nice!) to 89% in just one week of

Symbicort. He is still nebbing Albuterol and using a vest once a day. And what

is it about Symbicort or Advair that helps so much? Even when he is coughing,

his peak flows are usually in the green. He just coughs and gets really out of

breath when playing. And, (I know, I said I had one question...but others come

up!) he is now on Nasonex to clear out his sinuses. He does a lot of mouth

breathing and throat clearing. Has this helped people here with asthma make the

cough go away?

I can only imagine how ignorant I sound. I get that he has asthma, his pre

bronchodilator test #s go up 18% after the albuterol when he does PFTs but he

just never seems totally under control of this cough, throat clearing and

breathlessness. I know so many of you have such serious asthma, and it is asthma

in our case, I get that it is severe, I just cannot grasp what that really looks

like. I always just assumed it was more reactive and twitchy looking. He never

wheezes or reacts to things, it is just constant.

Only time will really tell. If you have any other ideas, I would love to hear

them. Ann, I am curious about your question about our CF doctor. Any other

ideas? Are there really doctors in the world you can trust?? I certainly hope

so, but I wouldn't hold my own breath on it!

>

> Hi woman. I think it is well said by Ann. Just my personal opinion, but I

> would restart the Symbicort to get control then do the bronchoscope. A

> bronchoscope is no fun, but at least in my case it was invaluable. It

provided

> many answers. I hope your son gets to feeling better soon.

>

> Madeline

>

>

>

> ________________________________

>

> To: asthma

> Sent: Wed, May 4, 2011 6:51:53 AM

> Subject: RE: what to do

>

>

> Thats a tough call. If he did well on the Symbicort, he may very well need to

> be on it to keep down the inflammation. The next question is how well do you

> trust your current CF doctor?

>

>

> One of the components to asthma is reactivity. The reactivity generates an

> inflammatory response that leads to the buildup of the phlegm and mucus which

of

> course narrows the airways both by the inflammation and because of the " gunk " .

> If the doc is willling to do one once you can get some control over the

> 'asthma' maybe getting him back on Symbicort for some time might be the

answer.

>

> If it is any consolation, my cousin's boy had asthma wicked bad until xolair

> came out. At 8 this kid had already been on Adult doses of most of his meds

> with barely any control. They checked him out for CF too...but fortunately he

> did not have it. The xolair shots came out and he qualified so they got him

on

> the shots..with awesome results for him. It doesnt work that good for all

> people, but he went from at least one ER trip/hospitalization/month to 1 in a

> year. For him, xolair was a miracle drug. Hes 20 now and doing really well

in

> college with minor problems occasionally if he gets sick. So if this is in

fact

> " just " asthma, hold on to the thought that there is hope for improvement....

>

> Ann

>

>

> what to do

>

>

> So my son was on the Bactrim for Staph culture and on Symbicort 160 for

> " asthma. " He got somewhat better after six weeks of abx and his PFTs were up

so

> we took him off Symbicort and put him on QVAR 80. He is still doing albuterol

> nebs and using a vest for chest clearance, both twice a day. He occasionally

has

> low grade fevers but even more obvious, his really heavy phlegmy cough is

back.

> I am so frustrated, he has been really bad since early February.

>

> We wanted him off the Symbicort since he is only 7 but would your guess be

that

> it helped keep inflammation down and he needs it? Or, could he still be

> culturing bugs in his lungs? I am still so tempted to ask for a bronchoscopy

to

> figure this out once and for all. It has been recommended to us by two other

CF

> clinics but our CF doctor won't do it now since he seems so reactive. I

wouldn't

> call it reactive, I would call it sick.

> I would love some input. I am all out of ideas but hate to see him suffer so

> much.

>

[Guest guest]

Would you believe that we have both been to National Jewish AND have been to

many other doctors??? I am sure you can. So why I am still so clueless? Good

question! I am sorry, I know I am a total pain in the butt. We have just

struggled for a very long time to figure our sweet Owen out.

Everywhere we go, they tell us they are not sure what is causing his problems.

He is failure to thrive, hence the g-tube. Creon enzymes work wonders. He can

eat almost any foods now without vomiting to the point of dehydration so we are

thrilled. And, he gained six pounds in three weeks on the enzymes. He does

albuterol nebs and uses a vest machine for chest airway clearance once a day and

he is now back on Symbicort 80. He also uses Nasonex due to sinus issues. His

FEV1% is actually not too bad at around 80% but it goes down every time we have

it checked. And he is very susceptible to infections in his lungs and sinuses.

His glands are often swollen and look like super balls in his neck and he gets

lots of severe bloody noses.

My true confession is that I really believe he, unfortunately, has CF. His

sweats were borderline and all of the other symptoms add up. Because no one will

diagnose him with it (he has variants and protein changing polymorphisms but no

known mutations), I try often to make the asthma diagnosis fit, which is why I

come here. I am hoping to learn more about the effects asthma has on others. I

ask stupid questions because I just want to understand how it might fit asthma.

I really don't trust doctors at this point but we do need them so I ask my hard

questions here because there isn't anyone I feel like can ask at our clinic.

Half the time, they don't even call back when I leave a message (there are

several other people we know dealing with the same issues at this clinic so I

know it's not just us). Every doctor meets us and asks if he has been tested for

CF. Whenever I have asked anyone what causes digestive and respiratory issues,

they all say CF. There is no " look " of a CF person, but if there was, Owen has

it. He is pale, super skinny, bags under his eyes, sweats a ton and just in

general does not look well. And, even since we were at NJ almost two years ago,

he has gotten a lot worse in his lungs.

There are lots of people who are misdiagnosed with food allergies and asthma who

are later told they do in fact have CF. If we are following that path, I guess I

have to figure out how to fit in somewhere in the meantime and I have found

people here to be very patient and helpful with me, so I am doing my best to

call it asthma, learn more about it and to be patient with myself!

So accept my sincere apology for sounding completely ignorant. I have just

resigned myself to learn as much about how others feel and threat their asthma

because right now, it is all we have to guide us.

>

> >

>

> > Hi woman. I think it is well said by Ann. Just my personal opinion, but I

>

> > would restart the Symbicort to get control then do the bronchoscope. A

>

> > bronchoscope is no fun, but at least in my case it was invaluable. It

provided

>

> > many answers. I hope your son gets to feeling better soon.

>

> >

>

> > Madeline

>

> >

>

> >

>

> >

>

> > ________________________________

>

> > From: ANN <FFTaz71@>

>

> > To: asthma

>

> > Sent: Wed, May 4, 2011 6:51:53 AM

>

> > Subject: RE: what to do

>

> >

>

> >

>

> > Thats a tough call. If he did well on the Symbicort, he may very well need

to

>

> > be on it to keep down the inflammation. The next question is how well do

you

>

> > trust your current CF doctor?

>

> >

>

> >

>

> > One of the components to asthma is reactivity. The reactivity generates an

>

> > inflammatory response that leads to the buildup of the phlegm and mucus

which of

>

> > course narrows the airways both by the inflammation and because of the

" gunk " .

>

> > If the doc is willling to do one once you can get some control over the

>

> > 'asthma' maybe getting him back on Symbicort for some time might be the

answer.

>

> >

>

> > If it is any consolation, my cousin's boy had asthma wicked bad until xolair

>

> > came out. At 8 this kid had already been on Adult doses of most of his meds

>

> > with barely any control. They checked him out for CF too...but fortunately

he

>

> > did not have it. The xolair shots came out and he qualified so they got him

on

>

> > the shots..with awesome results for him. It doesnt work that good for all

>

> > people, but he went from at least one ER trip/hospitalization/month to 1 in

a

>

> > year. For him, xolair was a miracle drug. Hes 20 now and doing really

well in

>

> > college with minor problems occasionally if he gets sick. So if this is in

fact

>

> > " just " asthma, hold on to the thought that there is hope for improvement....

>

> >

>

> > Ann

>

> >

>

> >

>

> > what to do

>

> >

>

> >

>

> > So my son was on the Bactrim for Staph culture and on Symbicort 160 for

>

> > " asthma. " He got somewhat better after six weeks of abx and his PFTs were up

so

>

> > we took him off Symbicort and put him on QVAR 80. He is still doing

albuterol

>

> > nebs and using a vest for chest clearance, both twice a day. He occasionally

has

>

> > low grade fevers but even more obvious, his really heavy phlegmy cough is

back.

>

> > I am so frustrated, he has been really bad since early February.

>

> >

>

> > We wanted him off the Symbicort since he is only 7 but would your guess be

that

>

> > it helped keep inflammation down and he needs it? Or, could he still be

>

> > culturing bugs in his lungs? I am still so tempted to ask for a bronchoscopy

to

>

> > figure this out once and for all. It has been recommended to us by two other

CF

>

> > clinics but our CF doctor won't do it now since he seems so reactive. I

wouldn't

>

> > call it reactive, I would call it sick.

>

> > I would love some input. I am all out of ideas but hate to see him suffer so

>

> > much.

>

> >

>

[Guest guest]

You all bring tears to my eyes. I cannot even come close to thanking you enough

for your support, kind words and patience. It is absolutely heart breaking to be

the mother of a child who suffers. I so often feel crazy and very alone but

thank god that when I do reach out, people like you all here give me more

encouragement and strength to keep on.

Tomorrow is another day that will inevitably bring new ideas. Thank you so much

for being there with me and here's to better tomorrows for us all!

> >

> > >

> >

> > > Hi woman. I think it is well said by Ann. Just my personal opinion, but

I

> >

> > > would restart the Symbicort to get control then do the bronchoscope. A

> >

> > > bronchoscope is no fun, but at least in my case it was invaluable. It

provided

> >

> > > many answers. I hope your son gets to feeling better soon.

> >

> > >

> >

> > > Madeline

> >

> > >

> >

> > >

> >

> > >

> >

> > > ________________________________

> >

> > > From: ANN <FFTaz71@>

> >

> > > To: asthma

> >

> > > Sent: Wed, May 4, 2011 6:51:53 AM

> >

> > > Subject: RE: what to do

> >

> > >

> >

> > >

> >

> > > Thats a tough call. If he did well on the Symbicort, he may very well

need to

> >

> > > be on it to keep down the inflammation. The next question is how well do

you

> >

> > > trust your current CF doctor?

> >

> > >

> >

> > >

> >

> > > One of the components to asthma is reactivity. The reactivity generates

an

> >

> > > inflammatory response that leads to the buildup of the phlegm and mucus

which of

> >

> > > course narrows the airways both by the inflammation and because of the

" gunk " .

> >

> > > If the doc is willling to do one once you can get some control over the

> >

> > > 'asthma' maybe getting him back on Symbicort for some time might be the

answer.

> >

> > >

> >

> > > If it is any consolation, my cousin's boy had asthma wicked bad until

xolair

> >

> > > came out. At 8 this kid had already been on Adult doses of most of his

meds

> >

> > > with barely any control. They checked him out for CF too...but

fortunately he

> >

> > > did not have it. The xolair shots came out and he qualified so they got

him on

> >

> > > the shots..with awesome results for him. It doesnt work that good for all

> >

> > > people, but he went from at least one ER trip/hospitalization/month to 1

in a

> >

> > > year. For him, xolair was a miracle drug. Hes 20 now and doing really

well in

> >

> > > college with minor problems occasionally if he gets sick. So if this is

in fact

> >

> > > " just " asthma, hold on to the thought that there is hope for

improvement....

> >

> > >

> >

> > > Ann

> >

> > >

> >

> > >

> >

> > > what to do

> >

> > >

> >

> > >

> >

> > > So my son was on the Bactrim for Staph culture and on Symbicort 160 for

> >

> > > " asthma. " He got somewhat better after six weeks of abx and his PFTs were

up so

> >

> > > we took him off Symbicort and put him on QVAR 80. He is still doing

albuterol

> >

> > > nebs and using a vest for chest clearance, both twice a day. He

occasionally has

> >

> > > low grade fevers but even more obvious, his really heavy phlegmy cough is

back.

> >

> > > I am so frustrated, he has been really bad since early February.

> >

> > >

> >

> > > We wanted him off the Symbicort since he is only 7 but would your guess be

that

> >

> > > it helped keep inflammation down and he needs it? Or, could he still be

> >

> > > culturing bugs in his lungs? I am still so tempted to ask for a

bronchoscopy to

> >

> > > figure this out once and for all. It has been recommended to us by two

other CF

> >

> > > clinics but our CF doctor won't do it now since he seems so reactive. I

wouldn't

> >

> > > call it reactive, I would call it sick.

> >

> > > I would love some input. I am all out of ideas but hate to see him suffer

so

> >

> > > much.

> >

> > >

> >

>

[Guest guest]

I have been told by some other CF docs, not ours, that the acapella would be

great for Owen. We use the VEST clearance system instead but I do still wonder

if the acapella would do even more? The VEST shakes the daylights out of him and

he can loosen some of the junk in his lungs to cough it out. We use albuterol

nebs beforehand to open the airways. I still would love to use hypertonic saline

or even pulmozyme since his phlegm is so thick and loosening it up would

probably help a lot. HTS is used for asthma in some cases, and for sure with

pneumonia but our CF doctor doesn't want to try it just yet. She says we want

Owen coughing less. That kind of contradicts my gut feeling because I think he

coughs to get the phlegm out. I actually think loosening it would eventually

clear him out and THEN he will cough less.

I just saw a commercial for Symbicort and it said it is used for COPD-chronic

bronchitis or emphysema. Was it just that commercial trying to hit that audience

or is it also prescribed for asthma? In any case, back on Symbicort 80, he is

doing better than QVAR 80. I will be curious to see if/when his PFT's go back

up. Between that and the Nasonex, I am keeping my fingers crossed that we see

some good improvements.

> >

> > >

> >

> > > Hi woman. I think it is well said by Ann. Just my personal opinion, but

I

> >

> > > would restart the Symbicort to get control then do the bronchoscope. A

> >

> > > bronchoscope is no fun, but at least in my case it was invaluable. It

> >provided

> >

> > > many answers. I hope your son gets to feeling better soon.

> >

> > >

> >

> > > Madeline

> >

> > >

> >

> > >

> >

> > >

> >

> > > ________________________________

> >

> > > From: ANN <FFTaz71@>

> >

> > > To: asthma

> >

> > > Sent: Wed, May 4, 2011 6:51:53 AM

> >

> > > Subject: RE: what to do

> >

> > >

> >

> > >

> >

> > > Thats a tough call. If he did well on the Symbicort, he may very well

need

> >to

> >

> > > be on it to keep down the inflammation. The next question is how well do

> you

> >

> > > trust your current CF doctor?

> >

> > >

> >

> > >

> >

> > > One of the components to asthma is reactivity. The reactivity generates

an

> >

> > > inflammatory response that leads to the buildup of the phlegm and mucus

which

> >of

> >

> > > course narrows the airways both by the inflammation and because of the

> > " gunk " .

> >

> > > If the doc is willling to do one once you can get some control over the

> >

> > > 'asthma' maybe getting him back on Symbicort for some time might be the

> >answer.

> >

> > >

> >

> > > If it is any consolation, my cousin's boy had asthma wicked bad until

xolair

> >

> > > came out. At 8 this kid had already been on Adult doses of most of his

meds

> >

> > > with barely any control. They checked him out for CF too...but

fortunately

> >he

> >

> > > did not have it. The xolair shots came out and he qualified so they got

him

> >on

> >

> > > the shots..with awesome results for him. It doesnt work that good for all

> >

> > > people, but he went from at least one ER trip/hospitalization/month to 1

in

> a

> >

> > > year. For him, xolair was a miracle drug. Hes 20 now and doing really

well

> >in

> >

> > > college with minor problems occasionally if he gets sick. So if this is

in

> >fact

> >

> > > " just " asthma, hold on to the thought that there is hope for

improvement....

> >

> > >

> >

> > > Ann

> >

> > >

> >

> > >

> >

> > > what to do

> >

> > >

> >

> > >

> >

> > > So my son was on the Bactrim for Staph culture and on Symbicort 160 for

> >

> > > " asthma. " He got somewhat better after six weeks of abx and his PFTs were

up

> >so

> >

> > > we took him off Symbicort and put him on QVAR 80. He is still doing

> albuterol

> >

> > > nebs and using a vest for chest clearance, both twice a day. He

occasionally

> >has

> >

> > > low grade fevers but even more obvious, his really heavy phlegmy cough is

> >back.

> >

> > > I am so frustrated, he has been really bad since early February.

> >

> > >

> >

> > > We wanted him off the Symbicort since he is only 7 but would your guess be

> >that

> >

> > > it helped keep inflammation down and he needs it? Or, could he still be

> >

> > > culturing bugs in his lungs? I am still so tempted to ask for a

bronchoscopy

> >to

> >

> > > figure this out once and for all. It has been recommended to us by two

other

> >CF

> >

> > > clinics but our CF doctor won't do it now since he seems so reactive. I

> >wouldn't

> >

> > > call it reactive, I would call it sick.

> >

> > > I would love some input. I am all out of ideas but hate to see him suffer

so

> >

> > > much.

> >

> > >

> >

>