Coughing Daughter

Z

zoeg

New member
Hello,

I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and throat culture in Oct.- nothing on either one. The cough was still lingering though, so they did Augmentin for 10 days immediately following the Bactrim. Well, the cough improved but was back in a couple weeks. Then we did a 4 week course of Augmentin adding in Albuterol. By the end of that it was gone. Now we are a week off of it and it is coming back. This morning I heard her cough about 7 times in bed in the 4:00 hour. She has been hacking on and off all day. I spoke to the clinic on Tuesday when I noticed it was returning and they said to increase CPT to four times a day (which we are doing) and to call them next week if it is continuing and we'll do another throat culture and x-ray. I am at my wit's end! I do think we have a great clinic, but I am just so scared why we cannot get rid of this. My mother in law has CF (almost 60 yrs. old and no problems) and she has always had a cough. I am so sick of my husband and in laws saying this is a normal part of CF. Kate has NEVER had a cough so something is definitely up! Has anyone else experienced a lingering cough like this, and what ended up happening? Should I be asking for anything they have not done for us? We don't do any nebs yet, just the albuterol and enzymes right now.

Thanks for letting me vent!!
Zoe mom to Kate wCF
 
Z

zoeg

New member
Hello,

I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and throat culture in Oct.- nothing on either one. The cough was still lingering though, so they did Augmentin for 10 days immediately following the Bactrim. Well, the cough improved but was back in a couple weeks. Then we did a 4 week course of Augmentin adding in Albuterol. By the end of that it was gone. Now we are a week off of it and it is coming back. This morning I heard her cough about 7 times in bed in the 4:00 hour. She has been hacking on and off all day. I spoke to the clinic on Tuesday when I noticed it was returning and they said to increase CPT to four times a day (which we are doing) and to call them next week if it is continuing and we'll do another throat culture and x-ray. I am at my wit's end! I do think we have a great clinic, but I am just so scared why we cannot get rid of this. My mother in law has CF (almost 60 yrs. old and no problems) and she has always had a cough. I am so sick of my husband and in laws saying this is a normal part of CF. Kate has NEVER had a cough so something is definitely up! Has anyone else experienced a lingering cough like this, and what ended up happening? Should I be asking for anything they have not done for us? We don't do any nebs yet, just the albuterol and enzymes right now.

Thanks for letting me vent!!
Zoe mom to Kate wCF
 
Z

zoeg

New member
Hello,

I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and throat culture in Oct.- nothing on either one. The cough was still lingering though, so they did Augmentin for 10 days immediately following the Bactrim. Well, the cough improved but was back in a couple weeks. Then we did a 4 week course of Augmentin adding in Albuterol. By the end of that it was gone. Now we are a week off of it and it is coming back. This morning I heard her cough about 7 times in bed in the 4:00 hour. She has been hacking on and off all day. I spoke to the clinic on Tuesday when I noticed it was returning and they said to increase CPT to four times a day (which we are doing) and to call them next week if it is continuing and we'll do another throat culture and x-ray. I am at my wit's end! I do think we have a great clinic, but I am just so scared why we cannot get rid of this. My mother in law has CF (almost 60 yrs. old and no problems) and she has always had a cough. I am so sick of my husband and in laws saying this is a normal part of CF. Kate has NEVER had a cough so something is definitely up! Has anyone else experienced a lingering cough like this, and what ended up happening? Should I be asking for anything they have not done for us? We don't do any nebs yet, just the albuterol and enzymes right now.

Thanks for letting me vent!!
Zoe mom to Kate wCF
 
Z

zoeg

New member
Hello,

I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and throat culture in Oct.- nothing on either one. The cough was still lingering though, so they did Augmentin for 10 days immediately following the Bactrim. Well, the cough improved but was back in a couple weeks. Then we did a 4 week course of Augmentin adding in Albuterol. By the end of that it was gone. Now we are a week off of it and it is coming back. This morning I heard her cough about 7 times in bed in the 4:00 hour. She has been hacking on and off all day. I spoke to the clinic on Tuesday when I noticed it was returning and they said to increase CPT to four times a day (which we are doing) and to call them next week if it is continuing and we'll do another throat culture and x-ray. I am at my wit's end! I do think we have a great clinic, but I am just so scared why we cannot get rid of this. My mother in law has CF (almost 60 yrs. old and no problems) and she has always had a cough. I am so sick of my husband and in laws saying this is a normal part of CF. Kate has NEVER had a cough so something is definitely up! Has anyone else experienced a lingering cough like this, and what ended up happening? Should I be asking for anything they have not done for us? We don't do any nebs yet, just the albuterol and enzymes right now.

Thanks for letting me vent!!
Zoe mom to Kate wCF
 
Z

zoeg

New member
Hello,
<br />
<br />I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and throat culture in Oct.- nothing on either one. The cough was still lingering though, so they did Augmentin for 10 days immediately following the Bactrim. Well, the cough improved but was back in a couple weeks. Then we did a 4 week course of Augmentin adding in Albuterol. By the end of that it was gone. Now we are a week off of it and it is coming back. This morning I heard her cough about 7 times in bed in the 4:00 hour. She has been hacking on and off all day. I spoke to the clinic on Tuesday when I noticed it was returning and they said to increase CPT to four times a day (which we are doing) and to call them next week if it is continuing and we'll do another throat culture and x-ray. I am at my wit's end! I do think we have a great clinic, but I am just so scared why we cannot get rid of this. My mother in law has CF (almost 60 yrs. old and no problems) and she has always had a cough. I am so sick of my husband and in laws saying this is a normal part of CF. Kate has NEVER had a cough so something is definitely up! Has anyone else experienced a lingering cough like this, and what ended up happening? Should I be asking for anything they have not done for us? We don't do any nebs yet, just the albuterol and enzymes right now.
<br />
<br />Thanks for letting me vent!!
<br />Zoe mom to Kate wCF
 
L

lexisangels05

New member
Maybe it is just allergies. My Lexi has a chronic cough that we can not figure out, but she has growth on her throat cultures. Just be careful that your MIL with CF doesn't give her a bug that only CFers can pass to each other. That is what I would be most scared about...
 
L

lexisangels05

New member
Maybe it is just allergies. My Lexi has a chronic cough that we can not figure out, but she has growth on her throat cultures. Just be careful that your MIL with CF doesn't give her a bug that only CFers can pass to each other. That is what I would be most scared about...
 
L

lexisangels05

New member
Maybe it is just allergies. My Lexi has a chronic cough that we can not figure out, but she has growth on her throat cultures. Just be careful that your MIL with CF doesn't give her a bug that only CFers can pass to each other. That is what I would be most scared about...
 
L

lexisangels05

New member
Maybe it is just allergies. My Lexi has a chronic cough that we can not figure out, but she has growth on her throat cultures. Just be careful that your MIL with CF doesn't give her a bug that only CFers can pass to each other. That is what I would be most scared about...
 
L

lexisangels05

New member
Maybe it is just allergies. My Lexi has a chronic cough that we can not figure out, but she has growth on her throat cultures. Just be careful that your MIL with CF doesn't give her a bug that only CFers can pass to each other. That is what I would be most scared about...
 
M

Mommafirst

Guest
Can you PM me your e-mail? I'd like to send you some information about a new protocol to make the way pulmonary exacerbations are dealt with more universal.

In our CF center, after 2 courses of antibiotics they put them in-patient. I've been where you are and it sucks. But our doctor is aggressive and doesn't want an exacerbation to linger because it can be causing lung damage that you don't know about.

The last time my daughter was still coughing a week into IV antibiotics and they wound up doing a bronchoscopy to figure out if the throat culture was missing something. Sure enough she stopped coughing once they adjusted her meds and now, three months later, she is still doing great with no cough.

We also started nebbing pulmozyme after the in-patient experience and it has made a huge difference as well.

Don't let this go. Your husband and ILs are possibly too set into their old expectations of HER CF and aren't realizing that your daughter is a different person and her CF will be different. I can understand that familiarity can sometimes lessen your/their levels of concern, but your gut instinct is right. If your daughter's base level cough is NO COUGH, they should be working to keep it that way.
 
M

Mommafirst

Guest
Can you PM me your e-mail? I'd like to send you some information about a new protocol to make the way pulmonary exacerbations are dealt with more universal.

In our CF center, after 2 courses of antibiotics they put them in-patient. I've been where you are and it sucks. But our doctor is aggressive and doesn't want an exacerbation to linger because it can be causing lung damage that you don't know about.

The last time my daughter was still coughing a week into IV antibiotics and they wound up doing a bronchoscopy to figure out if the throat culture was missing something. Sure enough she stopped coughing once they adjusted her meds and now, three months later, she is still doing great with no cough.

We also started nebbing pulmozyme after the in-patient experience and it has made a huge difference as well.

Don't let this go. Your husband and ILs are possibly too set into their old expectations of HER CF and aren't realizing that your daughter is a different person and her CF will be different. I can understand that familiarity can sometimes lessen your/their levels of concern, but your gut instinct is right. If your daughter's base level cough is NO COUGH, they should be working to keep it that way.
 
M

Mommafirst

Guest
Can you PM me your e-mail? I'd like to send you some information about a new protocol to make the way pulmonary exacerbations are dealt with more universal.

In our CF center, after 2 courses of antibiotics they put them in-patient. I've been where you are and it sucks. But our doctor is aggressive and doesn't want an exacerbation to linger because it can be causing lung damage that you don't know about.

The last time my daughter was still coughing a week into IV antibiotics and they wound up doing a bronchoscopy to figure out if the throat culture was missing something. Sure enough she stopped coughing once they adjusted her meds and now, three months later, she is still doing great with no cough.

We also started nebbing pulmozyme after the in-patient experience and it has made a huge difference as well.

Don't let this go. Your husband and ILs are possibly too set into their old expectations of HER CF and aren't realizing that your daughter is a different person and her CF will be different. I can understand that familiarity can sometimes lessen your/their levels of concern, but your gut instinct is right. If your daughter's base level cough is NO COUGH, they should be working to keep it that way.
 
M

Mommafirst

Guest
Can you PM me your e-mail? I'd like to send you some information about a new protocol to make the way pulmonary exacerbations are dealt with more universal.

In our CF center, after 2 courses of antibiotics they put them in-patient. I've been where you are and it sucks. But our doctor is aggressive and doesn't want an exacerbation to linger because it can be causing lung damage that you don't know about.

The last time my daughter was still coughing a week into IV antibiotics and they wound up doing a bronchoscopy to figure out if the throat culture was missing something. Sure enough she stopped coughing once they adjusted her meds and now, three months later, she is still doing great with no cough.

We also started nebbing pulmozyme after the in-patient experience and it has made a huge difference as well.

Don't let this go. Your husband and ILs are possibly too set into their old expectations of HER CF and aren't realizing that your daughter is a different person and her CF will be different. I can understand that familiarity can sometimes lessen your/their levels of concern, but your gut instinct is right. If your daughter's base level cough is NO COUGH, they should be working to keep it that way.
 
M

Mommafirst

Guest
Can you PM me your e-mail? I'd like to send you some information about a new protocol to make the way pulmonary exacerbations are dealt with more universal.
<br />
<br />In our CF center, after 2 courses of antibiotics they put them in-patient. I've been where you are and it sucks. But our doctor is aggressive and doesn't want an exacerbation to linger because it can be causing lung damage that you don't know about.
<br />
<br />The last time my daughter was still coughing a week into IV antibiotics and they wound up doing a bronchoscopy to figure out if the throat culture was missing something. Sure enough she stopped coughing once they adjusted her meds and now, three months later, she is still doing great with no cough.
<br />
<br />We also started nebbing pulmozyme after the in-patient experience and it has made a huge difference as well.
<br />
<br />Don't let this go. Your husband and ILs are possibly too set into their old expectations of HER CF and aren't realizing that your daughter is a different person and her CF will be different. I can understand that familiarity can sometimes lessen your/their levels of concern, but your gut instinct is right. If your daughter's base level cough is NO COUGH, they should be working to keep it that way.
<br />
<br />
 
A

AnD

New member
Have them check her sinuses too (with a catscan and a swab culture). If it's worse at night when she's laying down, I would think sinus issues. Also, you may want to ask about hypertonic saline and/or Pulmozyme nebs, if it's not her sinuses. Also ask about sinus rinses, especially if the catscan shows that that is a big part of the problem.

Your mom's instincts about "what's normal for cf" are right on- it's what's normal for YOUR CHILD and staying as healthy as possible for as long as possible by being proactive. And you certainly haven't exhausted all your options for getting rid of that cough <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Good luck and let us know how it goes!
 
A

AnD

New member
Have them check her sinuses too (with a catscan and a swab culture). If it's worse at night when she's laying down, I would think sinus issues. Also, you may want to ask about hypertonic saline and/or Pulmozyme nebs, if it's not her sinuses. Also ask about sinus rinses, especially if the catscan shows that that is a big part of the problem.

Your mom's instincts about "what's normal for cf" are right on- it's what's normal for YOUR CHILD and staying as healthy as possible for as long as possible by being proactive. And you certainly haven't exhausted all your options for getting rid of that cough <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Good luck and let us know how it goes!
 
A

AnD

New member
Have them check her sinuses too (with a catscan and a swab culture). If it's worse at night when she's laying down, I would think sinus issues. Also, you may want to ask about hypertonic saline and/or Pulmozyme nebs, if it's not her sinuses. Also ask about sinus rinses, especially if the catscan shows that that is a big part of the problem.

Your mom's instincts about "what's normal for cf" are right on- it's what's normal for YOUR CHILD and staying as healthy as possible for as long as possible by being proactive. And you certainly haven't exhausted all your options for getting rid of that cough <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Good luck and let us know how it goes!
 
A

AnD

New member
Have them check her sinuses too (with a catscan and a swab culture). If it's worse at night when she's laying down, I would think sinus issues. Also, you may want to ask about hypertonic saline and/or Pulmozyme nebs, if it's not her sinuses. Also ask about sinus rinses, especially if the catscan shows that that is a big part of the problem.

Your mom's instincts about "what's normal for cf" are right on- it's what's normal for YOUR CHILD and staying as healthy as possible for as long as possible by being proactive. And you certainly haven't exhausted all your options for getting rid of that cough <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Good luck and let us know how it goes!
 
A

AnD

New member
Have them check her sinuses too (with a catscan and a swab culture). If it's worse at night when she's laying down, I would think sinus issues. Also, you may want to ask about hypertonic saline and/or Pulmozyme nebs, if it's not her sinuses. Also ask about sinus rinses, especially if the catscan shows that that is a big part of the problem.
<br />
<br />Your mom's instincts about "what's normal for cf" are right on- it's what's normal for YOUR CHILD and staying as healthy as possible for as long as possible by being proactive. And you certainly haven't exhausted all your options for getting rid of that cough <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Good luck and let us know how it goes!
 
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