daughter keeps getting sick!!

M

momofcfprincess

New member
Hi Everyone,
This is my first time on this website and I am desperatly seeking some advice.
My 11 year old daughter with CF just keeps getting sick... what I mean by that is she has been hospitalized 7 times since January 2009. With the latest hospitalization at the end of August 2010. Her PFT when we left were 76% and 47% when she went in.
The problem is she coughs all night has so much excessive mucus at night, that she goes through a box of Kleenex each night. Whan she has her tune ups she does stop coughing but then a few weeks after her tune-up, the cough and mucus always comes back. I am so frustrated!! She has been so healthy up until 2009. Only had been hospiatlized once before!! She did culture micobacteriun and was treated for that in 2007. I keep asking her doctor...."could that (micobacterium) be back again and what is causing all her flare ups???" He said "no becuase the IV meds he puts her on wouldn't work for that" and when she goes in she does get better, but only for a short time.
She has no fever, shes just always tired from coughing all night. Any suggestions??? Thanks and God Bless!
 
M

momofcfprincess

New member
Hi Everyone,
This is my first time on this website and I am desperatly seeking some advice.
My 11 year old daughter with CF just keeps getting sick... what I mean by that is she has been hospitalized 7 times since January 2009. With the latest hospitalization at the end of August 2010. Her PFT when we left were 76% and 47% when she went in.
The problem is she coughs all night has so much excessive mucus at night, that she goes through a box of Kleenex each night. Whan she has her tune ups she does stop coughing but then a few weeks after her tune-up, the cough and mucus always comes back. I am so frustrated!! She has been so healthy up until 2009. Only had been hospiatlized once before!! She did culture micobacteriun and was treated for that in 2007. I keep asking her doctor...."could that (micobacterium) be back again and what is causing all her flare ups???" He said "no becuase the IV meds he puts her on wouldn't work for that" and when she goes in she does get better, but only for a short time.
She has no fever, shes just always tired from coughing all night. Any suggestions??? Thanks and God Bless!
 
M

momofcfprincess

New member
Hi Everyone,
<br />This is my first time on this website and I am desperatly seeking some advice.
<br />My 11 year old daughter with CF just keeps getting sick... what I mean by that is she has been hospitalized 7 times since January 2009. With the latest hospitalization at the end of August 2010. Her PFT when we left were 76% and 47% when she went in.
<br />The problem is she coughs all night has so much excessive mucus at night, that she goes through a box of Kleenex each night. Whan she has her tune ups she does stop coughing but then a few weeks after her tune-up, the cough and mucus always comes back. I am so frustrated!! She has been so healthy up until 2009. Only had been hospiatlized once before!! She did culture micobacteriun and was treated for that in 2007. I keep asking her doctor...."could that (micobacterium) be back again and what is causing all her flare ups???" He said "no becuase the IV meds he puts her on wouldn't work for that" and when she goes in she does get better, but only for a short time.
<br />She has no fever, shes just always tired from coughing all night. Any suggestions??? Thanks and God Bless!
 
R

rubyroselee

New member
I'm sorry to hear about your daughter. The only suggestion I can lend is propping her up on a couple pillows at night for sleeping. Whenever I'm sick or if I start coughing a lot at night, I prop myself up on a few pillows and I am able to go back to sleep without coughing so much. Hope that helps.
 
R

rubyroselee

New member
I'm sorry to hear about your daughter. The only suggestion I can lend is propping her up on a couple pillows at night for sleeping. Whenever I'm sick or if I start coughing a lot at night, I prop myself up on a few pillows and I am able to go back to sleep without coughing so much. Hope that helps.
 
R

rubyroselee

New member
I'm sorry to hear about your daughter. The only suggestion I can lend is propping her up on a couple pillows at night for sleeping. Whenever I'm sick or if I start coughing a lot at night, I prop myself up on a few pillows and I am able to go back to sleep without coughing so much. Hope that helps.
 
M

Mommafirst

Guest
I'm so sorry. CF really sucks.

Has she had a bronchoscopy to be sure you are adressing all the things she cultures? Does she do pulmozyme and hypertonic saline? Any luck with Cayston?

I don't really have any good suggestions. I wish I could help. I hate this disease.
 
M

Mommafirst

Guest
I'm so sorry. CF really sucks.

Has she had a bronchoscopy to be sure you are adressing all the things she cultures? Does she do pulmozyme and hypertonic saline? Any luck with Cayston?

I don't really have any good suggestions. I wish I could help. I hate this disease.
 
M

Mommafirst

Guest
I'm so sorry. CF really sucks.
<br />
<br />Has she had a bronchoscopy to be sure you are adressing all the things she cultures? Does she do pulmozyme and hypertonic saline? Any luck with Cayston?
<br />
<br />I don't really have any good suggestions. I wish I could help. I hate this disease.
 
M

momofcfprincess

New member
Hi,
She takes albuterol X3 day, TObi, Cayston, Pulmozyme.
she started the Cayston 6 months ago.... I can't tell that it is hepling any. She is actually pretty great during the day. Only coughing every now and then. It is just at night that she coughs so much and spits up so much mucus. She just came off 3 weeks of oral antibiotics.... didnt really help. I think from some of the responses that I am going to request her doc do another broncoscopy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

momofcfprincess

New member
Hi,
She takes albuterol X3 day, TObi, Cayston, Pulmozyme.
she started the Cayston 6 months ago.... I can't tell that it is hepling any. She is actually pretty great during the day. Only coughing every now and then. It is just at night that she coughs so much and spits up so much mucus. She just came off 3 weeks of oral antibiotics.... didnt really help. I think from some of the responses that I am going to request her doc do another broncoscopy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

momofcfprincess

New member
Hi,
<br /> She takes albuterol X3 day, TObi, Cayston, Pulmozyme.
<br />she started the Cayston 6 months ago.... I can't tell that it is hepling any. She is actually pretty great during the day. Only coughing every now and then. It is just at night that she coughs so much and spits up so much mucus. She just came off 3 weeks of oral antibiotics.... didnt really help. I think from some of the responses that I am going to request her doc do another broncoscopy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
 
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