I am new here!

C

csan00

New member
Hello everyone, My name is Chy. I am the guardian of a 4 year old , Cameron. We have had him since he was 2 weeks old. He was diagnosed at 6 mos old, with CF.
. . He is in a crisis right now. WE do the vest twice daily for 20 minutes, the nebulizer 4 times daily. He is on Ceron enzymes for weight control. He is on PediaSure . He coughs so much he throws up from it. Exray's are clear . No infection's present. But running a fever of 104.4 and his doc says he is stumped. Got to days of Rochepin treatment. and on an oral antiboitic treatment. Still has fever .

I am new here and not familuar with how this works. But just need to know if someone else has had this experience with a CF child?


Chy/ guardian of 4 yr old with CF,,,,Cameron.
 
C

csan00

New member
Hello everyone, My name is Chy. I am the guardian of a 4 year old , Cameron. We have had him since he was 2 weeks old. He was diagnosed at 6 mos old, with CF.
. . He is in a crisis right now. WE do the vest twice daily for 20 minutes, the nebulizer 4 times daily. He is on Ceron enzymes for weight control. He is on PediaSure . He coughs so much he throws up from it. Exray's are clear . No infection's present. But running a fever of 104.4 and his doc says he is stumped. Got to days of Rochepin treatment. and on an oral antiboitic treatment. Still has fever .

I am new here and not familuar with how this works. But just need to know if someone else has had this experience with a CF child?


Chy/ guardian of 4 yr old with CF,,,,Cameron.
 
C

csan00

New member
Hello everyone, My name is Chy. I am the guardian of a 4 year old , Cameron. We have had him since he was 2 weeks old. He was diagnosed at 6 mos old, with CF.
. . He is in a crisis right now. WE do the vest twice daily for 20 minutes, the nebulizer 4 times daily. He is on Ceron enzymes for weight control. He is on PediaSure . He coughs so much he throws up from it. Exray's are clear . No infection's present. But running a fever of 104.4 and his doc says he is stumped. Got to days of Rochepin treatment. and on an oral antiboitic treatment. Still has fever .

I am new here and not familuar with how this works. But just need to know if someone else has had this experience with a CF child?


Chy/ guardian of 4 yr old with CF,,,,Cameron.
 
C

csan00

New member
Hello everyone, My name is Chy. I am the guardian of a 4 year old , Cameron. We have had him since he was 2 weeks old. He was diagnosed at 6 mos old, with CF.
. . He is in a crisis right now. WE do the vest twice daily for 20 minutes, the nebulizer 4 times daily. He is on Ceron enzymes for weight control. He is on PediaSure . He coughs so much he throws up from it. Exray's are clear . No infection's present. But running a fever of 104.4 and his doc says he is stumped. Got to days of Rochepin treatment. and on an oral antiboitic treatment. Still has fever .

I am new here and not familuar with how this works. But just need to know if someone else has had this experience with a CF child?


Chy/ guardian of 4 yr old with CF,,,,Cameron.
 
C

csan00

New member
Hello everyone, My name is Chy. I am the guardian of a 4 year old , Cameron. We have had him since he was 2 weeks old. He was diagnosed at 6 mos old, with CF.
<br />. . He is in a crisis right now. WE do the vest twice daily for 20 minutes, the nebulizer 4 times daily. He is on Ceron enzymes for weight control. He is on PediaSure . He coughs so much he throws up from it. Exray's are clear . No infection's present. But running a fever of 104.4 and his doc says he is stumped. Got to days of Rochepin treatment. and on an oral antiboitic treatment. Still has fever .
<br />
<br />I am new here and not familuar with how this works. But just need to know if someone else has had this experience with a CF child?
<br />
<br />
<br />Chy/ guardian of 4 yr old with CF,,,,Cameron.
 
R

Rebjane

Super Moderator
I'm sorry Cameron is not well. Are you seeing a CF doctor at a CF clinic? Have they tested him for influenza? I know it's been going around and even if you got the flu vaccine you can still get the flu. Also, has Cameron been throat cultured for Cf bacteria? It's very important to make sure he is on the correct antibiotic for the correct bacteria. When my daughter is not well, I up her VEST treatments from 3 times a day to 4 times a day. Also, whoever is reading the chest x rays, are they familiar with CF patients? I've had a doc read my daughter chest film and say it was "normal" and then have her CF doc say it absolutely was not normal.
 
R

Rebjane

Super Moderator
I'm sorry Cameron is not well. Are you seeing a CF doctor at a CF clinic? Have they tested him for influenza? I know it's been going around and even if you got the flu vaccine you can still get the flu. Also, has Cameron been throat cultured for Cf bacteria? It's very important to make sure he is on the correct antibiotic for the correct bacteria. When my daughter is not well, I up her VEST treatments from 3 times a day to 4 times a day. Also, whoever is reading the chest x rays, are they familiar with CF patients? I've had a doc read my daughter chest film and say it was "normal" and then have her CF doc say it absolutely was not normal.
 
R

Rebjane

Super Moderator
I'm sorry Cameron is not well. Are you seeing a CF doctor at a CF clinic? Have they tested him for influenza? I know it's been going around and even if you got the flu vaccine you can still get the flu. Also, has Cameron been throat cultured for Cf bacteria? It's very important to make sure he is on the correct antibiotic for the correct bacteria. When my daughter is not well, I up her VEST treatments from 3 times a day to 4 times a day. Also, whoever is reading the chest x rays, are they familiar with CF patients? I've had a doc read my daughter chest film and say it was "normal" and then have her CF doc say it absolutely was not normal.
 
R

Rebjane

Super Moderator
I'm sorry Cameron is not well. Are you seeing a CF doctor at a CF clinic? Have they tested him for influenza? I know it's been going around and even if you got the flu vaccine you can still get the flu. Also, has Cameron been throat cultured for Cf bacteria? It's very important to make sure he is on the correct antibiotic for the correct bacteria. When my daughter is not well, I up her VEST treatments from 3 times a day to 4 times a day. Also, whoever is reading the chest x rays, are they familiar with CF patients? I've had a doc read my daughter chest film and say it was "normal" and then have her CF doc say it absolutely was not normal.
 
R

Rebjane

Super Moderator
I'm sorry Cameron is not well. Are you seeing a CF doctor at a CF clinic? Have they tested him for influenza? I know it's been going around and even if you got the flu vaccine you can still get the flu. Also, has Cameron been throat cultured for Cf bacteria? It's very important to make sure he is on the correct antibiotic for the correct bacteria. When my daughter is not well, I up her VEST treatments from 3 times a day to 4 times a day. Also, whoever is reading the chest x rays, are they familiar with CF patients? I've had a doc read my daughter chest film and say it was "normal" and then have her CF doc say it absolutely was not normal.
 
R

Ratatosk

Administrator
Staff member
Ditto on getting cultures and making sure you're seeing a CF doctor. A couple of times DS has gotten a cough and I've taken him in to the peds clinic and have been told his lungs are clear, that CFers cough... Only to find that he's culturing something, is having a flare up and needs to be on antibiotics.

Might be a good idea to have him checked for influenza or RSV. Have them do a sputum/throat culture for any cf bugs (pseudo, staph, mrsa...) Meanwhile, you may also want to increase the vest treatments to one or two more
 
R

Ratatosk

Administrator
Staff member
Ditto on getting cultures and making sure you're seeing a CF doctor. A couple of times DS has gotten a cough and I've taken him in to the peds clinic and have been told his lungs are clear, that CFers cough... Only to find that he's culturing something, is having a flare up and needs to be on antibiotics.

Might be a good idea to have him checked for influenza or RSV. Have them do a sputum/throat culture for any cf bugs (pseudo, staph, mrsa...) Meanwhile, you may also want to increase the vest treatments to one or two more
 
R

Ratatosk

Administrator
Staff member
Ditto on getting cultures and making sure you're seeing a CF doctor. A couple of times DS has gotten a cough and I've taken him in to the peds clinic and have been told his lungs are clear, that CFers cough... Only to find that he's culturing something, is having a flare up and needs to be on antibiotics.

Might be a good idea to have him checked for influenza or RSV. Have them do a sputum/throat culture for any cf bugs (pseudo, staph, mrsa...) Meanwhile, you may also want to increase the vest treatments to one or two more
 
R

Ratatosk

Administrator
Staff member
Ditto on getting cultures and making sure you're seeing a CF doctor. A couple of times DS has gotten a cough and I've taken him in to the peds clinic and have been told his lungs are clear, that CFers cough... Only to find that he's culturing something, is having a flare up and needs to be on antibiotics.

Might be a good idea to have him checked for influenza or RSV. Have them do a sputum/throat culture for any cf bugs (pseudo, staph, mrsa...) Meanwhile, you may also want to increase the vest treatments to one or two more
 
R

Ratatosk

Administrator
Staff member
Ditto on getting cultures and making sure you're seeing a CF doctor. A couple of times DS has gotten a cough and I've taken him in to the peds clinic and have been told his lungs are clear, that CFers cough... Only to find that he's culturing something, is having a flare up and needs to be on antibiotics.
<br />
<br />Might be a good idea to have him checked for influenza or RSV. Have them do a sputum/throat culture for any cf bugs (pseudo, staph, mrsa...) Meanwhile, you may also want to increase the vest treatments to one or two more
 
C

csan00

New member
Yes he did have the throat culture! Negetaive . He had 2 shots of Rocephin, and is on Cefdinir , oral antibiotic ....X-rays are clear,

He is definately with a certified CF doctor. Treated at the Sparks Kids health in F.S. Arkansas. He fever is presistantly high! It was up too 103 today even with the antibiotic's! This has been going on all week now! He has never had a flare up as this before!


Chy ,,,,,,,,,,,Cameron 4 with CF,.
 
C

csan00

New member
Yes he did have the throat culture! Negetaive . He had 2 shots of Rocephin, and is on Cefdinir , oral antibiotic ....X-rays are clear,

He is definately with a certified CF doctor. Treated at the Sparks Kids health in F.S. Arkansas. He fever is presistantly high! It was up too 103 today even with the antibiotic's! This has been going on all week now! He has never had a flare up as this before!


Chy ,,,,,,,,,,,Cameron 4 with CF,.
 
C

csan00

New member
Yes he did have the throat culture! Negetaive . He had 2 shots of Rocephin, and is on Cefdinir , oral antibiotic ....X-rays are clear,

He is definately with a certified CF doctor. Treated at the Sparks Kids health in F.S. Arkansas. He fever is presistantly high! It was up too 103 today even with the antibiotic's! This has been going on all week now! He has never had a flare up as this before!


Chy ,,,,,,,,,,,Cameron 4 with CF,.
 
C

csan00

New member
Yes he did have the throat culture! Negetaive . He had 2 shots of Rocephin, and is on Cefdinir , oral antibiotic ....X-rays are clear,

He is definately with a certified CF doctor. Treated at the Sparks Kids health in F.S. Arkansas. He fever is presistantly high! It was up too 103 today even with the antibiotic's! This has been going on all week now! He has never had a flare up as this before!


Chy ,,,,,,,,,,,Cameron 4 with CF,.
 
C

csan00

New member
Yes he did have the throat culture! Negetaive . He had 2 shots of Rocephin, and is on Cefdinir , oral antibiotic ....X-rays are clear,
<br />
<br />He is definately with a certified CF doctor. Treated at the Sparks Kids health in F.S. Arkansas. He fever is presistantly high! It was up too 103 today even with the antibiotic's! This has been going on all week now! He has never had a flare up as this before!
<br />
<br />
<br />Chy ,,,,,,,,,,,Cameron 4 with CF,.
 
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