HELP

J

Justinsmom

New member
My 7 year old son (newly diagnosed with CF) got pneumonia almost 3 weeks ago. Didn't feel well in the evening, nausea, tummy pain and fever 103.5. Took to hospital worried about virus or pancreatitis (pancreatic insufficient) and it was pneumonia. X-ray was clear but the CT (to rule out appendix) showed an infiltrate in the left lower lung. No real pumonary symptoms. Just off the med's last wed, good PFT's at CF Clinic and Thurs night throws up and spikes a fever. Think it is a virus (talked to nurse at CF) and was assured his numbers looked good and his x-ray was clear. Friday took him to peditrician (local CF doc and asthma specialist) and he has bronchitis. PFT's were 70's. Checked him the next morning and put him on oral steroid. He has asthma also.
My questions:
1. Any other kids with pneumonia/bronchitis without pulmonary symptoms?
2. Does albuteral/xopenex help CF kids without asthma?
3. Does bronchitis go along with CF?
4. We are scheduled for a bronchoscopy, why is this usually done?
Sorry for so many basic questions. This is all so new to us and we have only been seen by CF once. Waiting for our bronchoscopy and meeting afterward to learn more.
Thank you in advance.
Josette
 
J

Justinsmom

New member
My 7 year old son (newly diagnosed with CF) got pneumonia almost 3 weeks ago. Didn't feel well in the evening, nausea, tummy pain and fever 103.5. Took to hospital worried about virus or pancreatitis (pancreatic insufficient) and it was pneumonia. X-ray was clear but the CT (to rule out appendix) showed an infiltrate in the left lower lung. No real pumonary symptoms. Just off the med's last wed, good PFT's at CF Clinic and Thurs night throws up and spikes a fever. Think it is a virus (talked to nurse at CF) and was assured his numbers looked good and his x-ray was clear. Friday took him to peditrician (local CF doc and asthma specialist) and he has bronchitis. PFT's were 70's. Checked him the next morning and put him on oral steroid. He has asthma also.
My questions:
1. Any other kids with pneumonia/bronchitis without pulmonary symptoms?
2. Does albuteral/xopenex help CF kids without asthma?
3. Does bronchitis go along with CF?
4. We are scheduled for a bronchoscopy, why is this usually done?
Sorry for so many basic questions. This is all so new to us and we have only been seen by CF once. Waiting for our bronchoscopy and meeting afterward to learn more.
Thank you in advance.
Josette
 
R

Ratatosk

Administrator
Staff member
Ds has been on albuterol/atriovent Nebs since he was a baby. Bronchiodialators are used to open up the airways to get things moving during cpt, as well as helping other nebbed meds get deeper into the lungs, like Tobi or pulmozyme. Ds had bronchitis as an infant, from a bug he brought home from the NICU, otherwise hasn't had issues. He did have some local X-rays showing infiltrate, no symptoms, but ct scans showed he was fine
 
R

Ratatosk

Administrator
Staff member
Ds has been on albuterol/atriovent Nebs since he was a baby. Bronchiodialators are used to open up the airways to get things moving during cpt, as well as helping other nebbed meds get deeper into the lungs, like Tobi or pulmozyme. Ds had bronchitis as an infant, from a bug he brought home from the NICU, otherwise hasn't had issues. He did have some local X-rays showing infiltrate, no symptoms, but ct scans showed he was fine
 
K

kellyga

New member
Infiltrates are more common in CF kids. From what I understand, it can be a sign of infection which makes sense with what you describe. As for your list of questions:

1. The one time my daughter had pneumonia, she really didn't have a lot of symptoms. Tired, acted like a cold, but we knew it was serious because her pulse ox went below 90.

2. The albuterol helps CF kids without asthma because during an exacerbation, the airways become inflamed. During normal times, they are used to open the airways as much as possible to get the inhaled medicines in deeper (for lack of a better description).

3. Bronchitis can go with CF, but it is also more common in asthmatics. Sometimes there is no correlation. My niece who doesn't have CF gets bronchitis with almost every cold she catches. She just seems to be prone to it.

4. Bronchoscopy is usually done if the doctor wants to get a good, deep culture of what is growing in their lungs. Once they have the results, they can target the specific bugs that are causing the infection/exacerbation. Bronchoscopy serves a similar purpose to the throat swab or sputum culture, but it's better. It also allows the doctor to get a good look at the lungs.

Hope this helps. I'm not as well versed as some, but wanted to offer my two cents. Hope your son is feeling better very soon .
 
K

kellyga

New member
Infiltrates are more common in CF kids. From what I understand, it can be a sign of infection which makes sense with what you describe. As for your list of questions:

1. The one time my daughter had pneumonia, she really didn't have a lot of symptoms. Tired, acted like a cold, but we knew it was serious because her pulse ox went below 90.

2. The albuterol helps CF kids without asthma because during an exacerbation, the airways become inflamed. During normal times, they are used to open the airways as much as possible to get the inhaled medicines in deeper (for lack of a better description).

3. Bronchitis can go with CF, but it is also more common in asthmatics. Sometimes there is no correlation. My niece who doesn't have CF gets bronchitis with almost every cold she catches. She just seems to be prone to it.

4. Bronchoscopy is usually done if the doctor wants to get a good, deep culture of what is growing in their lungs. Once they have the results, they can target the specific bugs that are causing the infection/exacerbation. Bronchoscopy serves a similar purpose to the throat swab or sputum culture, but it's better. It also allows the doctor to get a good look at the lungs.

Hope this helps. I'm not as well versed as some, but wanted to offer my two cents. Hope your son is feeling better very soon .
 
C

CJPsMom

New member
While we haven't had this happen to us, one of our friends through the CF clinic had a similar experience - no symptoms, went in for what they thought was a healthy visit and wound up admitted that evening with pneumonia. So, pneumonia can be there with no symptoms.
As for the albuterol, my little guy takes it twice a day when healthy - once with an inhaler, once through a nebulizer. He has been doing this since he was about 10 weeks old. The goal is to open the airways and get the gunk out. He does not have asthma (that we know of).
Hang in there!
 
C

CJPsMom

New member
While we haven't had this happen to us, one of our friends through the CF clinic had a similar experience - no symptoms, went in for what they thought was a healthy visit and wound up admitted that evening with pneumonia. So, pneumonia can be there with no symptoms.
As for the albuterol, my little guy takes it twice a day when healthy - once with an inhaler, once through a nebulizer. He has been doing this since he was about 10 weeks old. The goal is to open the airways and get the gunk out. He does not have asthma (that we know of).
Hang in there!
 
D

dbsholes

New member
Josette,

I am always happy to talk to parents of newly diagnosed cf kids. This is a very scary time for you, but fear can be highly destructive and also overcome by knowledge - and knowledge is best obtained by talking to people with cf. I am forty-five years old living in Vermont. My parents were told that I'd be dead by age five when I was diagnosed in late 1967. Clearly the doctors were wrong.

If your son has made it to age 7 without being diagnosed this means he probably has very light lung disease - as did I. This is GOOD news.

Please.. feel free to call me

David Sholes
Bennington Vermont

mobile: 303.882.6070
email: david@sholes.org

45yo male DDF508; CFRD since '04; PFTs in upper 80s (and only because I'm very lazy and do not exercise); Enzyme sufficient since starting insulin. If you want to improve your overall health and gain weight GET ON INSULIN - whether you're CFRD or not.
 
D

dbsholes

New member
Josette,

I am always happy to talk to parents of newly diagnosed cf kids. This is a very scary time for you, but fear can be highly destructive and also overcome by knowledge - and knowledge is best obtained by talking to people with cf. I am forty-five years old living in Vermont. My parents were told that I'd be dead by age five when I was diagnosed in late 1967. Clearly the doctors were wrong.

If your son has made it to age 7 without being diagnosed this means he probably has very light lung disease - as did I. This is GOOD news.

Please.. feel free to call me

David Sholes
Bennington Vermont

mobile: 303.882.6070
email: david@sholes.org

45yo male DDF508; CFRD since '04; PFTs in upper 80s (and only because I'm very lazy and do not exercise); Enzyme sufficient since starting insulin. If you want to improve your overall health and gain weight GET ON INSULIN - whether you're CFRD or not.
 
J

Justinsmom

New member
Thank you for your responses. Found out when we went back to the peditrician's that it was a second pneumonia. The first was bacterial and this was viral - 2 weeks apart. This was not nearly as serious because we caught it early. He kicked it in about a week with only oral steroids, symbacort (sp?) and xopenex every 4 hours. Funny thing is he had his first throat culture done 1 day before and it was clear. Never would have expected it.
 
J

Justinsmom

New member
Thank you for your responses. Found out when we went back to the peditrician's that it was a second pneumonia. The first was bacterial and this was viral - 2 weeks apart. This was not nearly as serious because we caught it early. He kicked it in about a week with only oral steroids, symbacort (sp?) and xopenex every 4 hours. Funny thing is he had his first throat culture done 1 day before and it was clear. Never would have expected it.
 
You must log in or register to reply here.
Top