Input

[Rebjane]

This winter has been tough for my daughter. She cultured pseudomonas first time in January did TOBI and Cipro to treat it then on her last day of Cipro she go the flu; ended back up on Cipro plus the TOBI and Zyvox. Repeat culture showed no pseudo; only staph areus and moderate yeast(after all those antibitoics).

Anyhow, she'ld been complaining of wheezing, sounds like mucus in her throat, lots of albuterol and vests and I brought her in to see the CF doc last Tuesday. Her PFT's were good, only maybe 2 points lower than her norm. Her o2 sat was good 98%. Her weight was fantastic gained 5 pounds back from the weight she lost the month before from the flu. Anyway, CF doc put her 5 days of prednisone and 14 days of Duricef(for the staph areus)He was surprised she was wheezing in all her lung fields considering her numbers otherwise were all so good.

She is on her last day of prednisone today and she is wheezing tonight. WTF. SHe is not sick at all. I can not figure her out at all. It is only like day 4 or 5 of her antibitoic, sometimes it can take until day 10 for things to settle for her cough wise.

I just think it's wierd for her to wheeze on prednisone. I am going to do some serious airway clearance tomorrrow(not that we don;t do it everyday anyway).

Am I not giving her enough time on the antibiotic?

I have pretty much called her CF doc at least once or twice a week since January. It's March!!!

I need to vent ; when I talk about this stuff with family, I think I make them nervous or upset..

I just want her back to baseline and we are having a tough time getting there

 

[Rebjane]

This winter has been tough for my daughter. She cultured pseudomonas first time in January did TOBI and Cipro to treat it then on her last day of Cipro she go the flu; ended back up on Cipro plus the TOBI and Zyvox. Repeat culture showed no pseudo; only staph areus and moderate yeast(after all those antibitoics).

Anyhow, she'ld been complaining of wheezing, sounds like mucus in her throat, lots of albuterol and vests and I brought her in to see the CF doc last Tuesday. Her PFT's were good, only maybe 2 points lower than her norm. Her o2 sat was good 98%. Her weight was fantastic gained 5 pounds back from the weight she lost the month before from the flu. Anyway, CF doc put her 5 days of prednisone and 14 days of Duricef(for the staph areus)He was surprised she was wheezing in all her lung fields considering her numbers otherwise were all so good.

She is on her last day of prednisone today and she is wheezing tonight. WTF. SHe is not sick at all. I can not figure her out at all. It is only like day 4 or 5 of her antibitoic, sometimes it can take until day 10 for things to settle for her cough wise.

I just think it's wierd for her to wheeze on prednisone. I am going to do some serious airway clearance tomorrrow(not that we don;t do it everyday anyway).

Am I not giving her enough time on the antibiotic?

I have pretty much called her CF doc at least once or twice a week since January. It's March!!!

I need to vent ; when I talk about this stuff with family, I think I make them nervous or upset..

I just want her back to baseline and we are having a tough time getting there

 

[Rebjane]

This winter has been tough for my daughter. She cultured pseudomonas first time in January did TOBI and Cipro to treat it then on her last day of Cipro she go the flu; ended back up on Cipro plus the TOBI and Zyvox. Repeat culture showed no pseudo; only staph areus and moderate yeast(after all those antibitoics).
<br />
<br />Anyhow, she'ld been complaining of wheezing, sounds like mucus in her throat, lots of albuterol and vests and I brought her in to see the CF doc last Tuesday. Her PFT's were good, only maybe 2 points lower than her norm. Her o2 sat was good 98%. Her weight was fantastic gained 5 pounds back from the weight she lost the month before from the flu. Anyway, CF doc put her 5 days of prednisone and 14 days of Duricef(for the staph areus)He was surprised she was wheezing in all her lung fields considering her numbers otherwise were all so good.
<br />
<br />She is on her last day of prednisone today and she is wheezing tonight. WTF. SHe is not sick at all. I can not figure her out at all. It is only like day 4 or 5 of her antibitoic, sometimes it can take until day 10 for things to settle for her cough wise.
<br />
<br />I just think it's wierd for her to wheeze on prednisone. I am going to do some serious airway clearance tomorrrow(not that we don;t do it everyday anyway).
<br />
<br />Am I not giving her enough time on the antibiotic?
<br />
<br />I have pretty much called her CF doc at least once or twice a week since January. It's March!!!
<br />
<br />I need to vent ; when I talk about this stuff with family, I think I make them nervous or upset..
<br />
<br />I just want her back to baseline and we are having a tough time getting there

 

[mag6125]

I'm sometimes still wheezy on Prednisone, sometimes it takes the full course to clear it up. Is she on any asthma medication? If she's not and she continues to be wheezy it might be something to ask about when you talk to her doctor.

 

[mag6125]

I'm sometimes still wheezy on Prednisone, sometimes it takes the full course to clear it up. Is she on any asthma medication? If she's not and she continues to be wheezy it might be something to ask about when you talk to her doctor.

 

[mag6125]

I'm sometimes still wheezy on Prednisone, sometimes it takes the full course to clear it up. Is she on any asthma medication? If she's not and she continues to be wheezy it might be something to ask about when you talk to her doctor.

 

[Rebjane]

Thanks for your reply. She is on Singulair, Pulmicort, albuterol. Not sure what else could be used. We are both very frustrated. I guess I'll give her til day 10 of anti's and then check in with the doc. I feel like I am missing something here.

Last night my daughter woke up from a nightmare. She said she dreamt she was falling off a cliff and I was trying to catch her and she woke up before she hit the ground. I got to say she is very insightful and this describes how we have both been feeling lately.

 

[Rebjane]

Thanks for your reply. She is on Singulair, Pulmicort, albuterol. Not sure what else could be used. We are both very frustrated. I guess I'll give her til day 10 of anti's and then check in with the doc. I feel like I am missing something here.

Last night my daughter woke up from a nightmare. She said she dreamt she was falling off a cliff and I was trying to catch her and she woke up before she hit the ground. I got to say she is very insightful and this describes how we have both been feeling lately.

 

[Rebjane]

Thanks for your reply. She is on Singulair, Pulmicort, albuterol. Not sure what else could be used. We are both very frustrated. I guess I'll give her til day 10 of anti's and then check in with the doc. I feel like I am missing something here.
<br />
<br />Last night my daughter woke up from a nightmare. She said she dreamt she was falling off a cliff and I was trying to catch her and she woke up before she hit the ground. I got to say she is very insightful and this describes how we have both been feeling lately.

 

[Mommafirst]

I'm so sorry that Maggie has been dealing with all this.

Can the docs hear her wheezing or is it just something Maggie notices?

I get a lot of wheezing myself when my acid reflux has been particularly bad, even if my asthma stuff is totally under control. Do you think she might have issues with this?

I hope she stops wheezing soon....that is a sound that can make a mom whose been on edge all this months crazy. (((((HUGS)))))

 

[Mommafirst]

I'm so sorry that Maggie has been dealing with all this.

Can the docs hear her wheezing or is it just something Maggie notices?

I get a lot of wheezing myself when my acid reflux has been particularly bad, even if my asthma stuff is totally under control. Do you think she might have issues with this?

I hope she stops wheezing soon....that is a sound that can make a mom whose been on edge all this months crazy. (((((HUGS)))))

 

[Mommafirst]

I'm so sorry that Maggie has been dealing with all this.
<br />
<br />Can the docs hear her wheezing or is it just something Maggie notices?
<br />
<br />I get a lot of wheezing myself when my acid reflux has been particularly bad, even if my asthma stuff is totally under control. Do you think she might have issues with this?
<br />
<br />I hope she stops wheezing soon....that is a sound that can make a mom whose been on edge all this months crazy. (((((HUGS)))))

 

[Rebjane]

The doc heard it when he listened last week. Plus Maggie hears/feels it. Even my son can hear it. It's better in the morning then gets worse through out the day. This morning she sounded clear. But after school she may start again...

 

[Rebjane]

The doc heard it when he listened last week. Plus Maggie hears/feels it. Even my son can hear it. It's better in the morning then gets worse through out the day. This morning she sounded clear. But after school she may start again...

 

[Rebjane]

The doc heard it when he listened last week. Plus Maggie hears/feels it. Even my son can hear it. It's better in the morning then gets worse through out the day. This morning she sounded clear. But after school she may start again...

 

[LouLou]

Has she been allergy tested? Is the prednisone course a taper and she did better at a higher dose but not at a lower dose?

She's been through a lot...a PA infection then the flu. Her airways may just still be inflammed from it all. I'd just give it time and try not to worry.

If there is any medication that takes away the wheezing she should be on this as many times a day as allowed.

 

[LouLou]

Has she been allergy tested? Is the prednisone course a taper and she did better at a higher dose but not at a lower dose?

She's been through a lot...a PA infection then the flu. Her airways may just still be inflammed from it all. I'd just give it time and try not to worry.

If there is any medication that takes away the wheezing she should be on this as many times a day as allowed.

 

[LouLou]

Has she been allergy tested? Is the prednisone course a taper and she did better at a higher dose but not at a lower dose?
<br />
<br />She's been through a lot...a PA infection then the flu. Her airways may just still be inflammed from it all. I'd just give it time and try not to worry.
<br />
<br />If there is any medication that takes away the wheezing she should be on this as many times a day as allowed.

 

[Rebjane]

Lauren,

I think you are right. I feel like her airways are inflammed from the being sick. I do think it will take time but I'm afraid of her getting sick again before I can get her inflammation under control. I set up her air purifier up in her room again.

I was thinking maybe her pulmicort dose should be increased. Or getting an Ige level done(she's due for this in June anyway. And or another sputum culture...I guess these are my next list of questions if things don't settle down in a couple days. Thanks for letting get my ideas down. Sometimes when I am on the phone with the doc I don't say everything cause I want him to make the final decision.

 

[Rebjane]

Lauren,

I think you are right. I feel like her airways are inflammed from the being sick. I do think it will take time but I'm afraid of her getting sick again before I can get her inflammation under control. I set up her air purifier up in her room again.

I was thinking maybe her pulmicort dose should be increased. Or getting an Ige level done(she's due for this in June anyway. And or another sputum culture...I guess these are my next list of questions if things don't settle down in a couple days. Thanks for letting get my ideas down. Sometimes when I am on the phone with the doc I don't say everything cause I want him to make the final decision.