Junky cough

[Justinsmom]

Hi,
My seven year old son was recently diagnosed with CF. He has had either junky sinus or cough sinceSeptember. Two sinus infections by Thanksgiving and then two pneumonias since February 11 (one bacterial and 1 milder viral.) Recenly he has that junky sinus stuff again and (not coughing all the time) an on and off junky cough and a little out of breath at times. Sometimes a little pain if he takes a deep breath. He is on Simbacourt now to keep him breathing well until his bronchoscopy next Monday. Is this how things go with CF kids? We had no pulmonary problems (only well controled asthma) until this year. He is completely PI and (in my opinion) drop in BMI to <3% prior to Creon in August and severe malnutrition brought all these problems on full force in September. When do you worry and call the doctor? My husband keeps reminding me that coughing is good. Is all this junk everywhere normal? How will I know (other than a high fever spike) that it is turning into something? I have run down the batteries in 2 ear thermomaters in the last month or so.
Thank you in advance.

 

[Justinsmom]

Hi,
My seven year old son was recently diagnosed with CF. He has had either junky sinus or cough sinceSeptember. Two sinus infections by Thanksgiving and then two pneumonias since February 11 (one bacterial and 1 milder viral.) Recenly he has that junky sinus stuff again and (not coughing all the time) an on and off junky cough and a little out of breath at times. Sometimes a little pain if he takes a deep breath. He is on Simbacourt now to keep him breathing well until his bronchoscopy next Monday. Is this how things go with CF kids? We had no pulmonary problems (only well controled asthma) until this year. He is completely PI and (in my opinion) drop in BMI to <3% prior to Creon in August and severe malnutrition brought all these problems on full force in September. When do you worry and call the doctor? My husband keeps reminding me that coughing is good. Is all this junk everywhere normal? How will I know (other than a high fever spike) that it is turning into something? I have run down the batteries in 2 ear thermomaters in the last month or so.
Thank you in advance.

 

[Ratatosk]

DS' base line is no cough. If he gets one, it usually means he's coming down with something. So we increase his CPT/vest treatments and contact his doctor. Years ago when DS was a baby, the local CF doctor tried to tell me that "they cough, it's what they do" and it turned out DS had bronchitis.

 

[Ratatosk]

DS' base line is no cough. If he gets one, it usually means he's coming down with something. So we increase his CPT/vest treatments and contact his doctor. Years ago when DS was a baby, the local CF doctor tried to tell me that "they cough, it's what they do" and it turned out DS had bronchitis.

 

[JennyCoulon]

Yes a cough is good but only if it is productive. My oldest son had this cough that was nagging and wasn't productive. We ended up finding out that he has allergy related asthma so he was put on Advair. He does Advair 2 times daily after Vest, Albuterol, Pulmozyme and he also does his albuterol inhaler 15 mins. before doing any kind of vigerous activity such as PE or soccer. He was also told to start doing the Sinus Rinse to help get that drainage to stop since he has sinus issues as well. He does the Sinus Rinse before bed right now which seems to really help a lot not only during the night but thoughout the day. I would look at all possiblities such as allergy testing, and trying the sinus rinse. Mason was a zero cough kid until this cough snuck up about a year ago and we just couldn't find the right regimen. Allergy related asthma is something that can come on later in a person/child with CF. We were put on a steriod 2 seperate times and then 2 other antibotics to ensure there were no infections that were causing this. Hope this helps.

 

[JennyCoulon]

Yes a cough is good but only if it is productive. My oldest son had this cough that was nagging and wasn't productive. We ended up finding out that he has allergy related asthma so he was put on Advair. He does Advair 2 times daily after Vest, Albuterol, Pulmozyme and he also does his albuterol inhaler 15 mins. before doing any kind of vigerous activity such as PE or soccer. He was also told to start doing the Sinus Rinse to help get that drainage to stop since he has sinus issues as well. He does the Sinus Rinse before bed right now which seems to really help a lot not only during the night but thoughout the day. I would look at all possiblities such as allergy testing, and trying the sinus rinse. Mason was a zero cough kid until this cough snuck up about a year ago and we just couldn't find the right regimen. Allergy related asthma is something that can come on later in a person/child with CF. We were put on a steriod 2 seperate times and then 2 other antibotics to ensure there were no infections that were causing this. Hope this helps.

 

[Printer]

Josette:

May I suggest that you get the Doctors/or his Nurses, e mail. Send an email and let them decide how important/irgent the question is. They will get back to tou.

I have been doing this for several years.

Bill

 

[Printer]

Josette:

May I suggest that you get the Doctors/or his Nurses, e mail. Send an email and let them decide how important/irgent the question is. They will get back to tou.

I have been doing this for several years.

Bill

 

[Tisha]

I recently heard about inhaling steam with lavender essential oil. It is actually very good to ease the coughing and helps release the mucus. The instructions are boiling 1 liter water (a quart) and once it cools down a minute, adding three drops of pure lavender oil. As long as you don't have asthma, it's a good relief. I've been doing it this week and I'm quite pleased about it.

 

[Tisha]

I recently heard about inhaling steam with lavender essential oil. It is actually very good to ease the coughing and helps release the mucus. The instructions are boiling 1 liter water (a quart) and once it cools down a minute, adding three drops of pure lavender oil. As long as you don't have asthma, it's a good relief. I've been doing it this week and I'm quite pleased about it.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tisha</b></i> I recently heard about inhaling steam with lavender essential oil. It is actually very good to ease the coughing and helps release the mucus. The instructions are boiling 1 liter water (a quart) and once it cools down a minute, adding three drops of pure lavender oil. As long as you don't have asthma, it's a good relief. I've been doing it this week and I'm quite pleased about it.</end quote>

Agreed. Tisha you should try doing the same with Frankincense carteri species. usually about 8-10 drops.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tisha</b></i> I recently heard about inhaling steam with lavender essential oil. It is actually very good to ease the coughing and helps release the mucus. The instructions are boiling 1 liter water (a quart) and once it cools down a minute, adding three drops of pure lavender oil. As long as you don't have asthma, it's a good relief. I've been doing it this week and I'm quite pleased about it.</end quote>

Agreed. Tisha you should try doing the same with Frankincense carteri species. usually about 8-10 drops.

 

[Rebjane]

Josette,

Every CF kids is different. I agree with Bill about talking to your son's CF doctor. You are new to this and if you have concerns, call. Don't feel like you are being a pest. You are advocating for your child. Sometimes, I feel like I need a direct line to my daughter's Doctor's office and nursing staff. They are usually very understanding and get that this is a new situation and you will have LOTS of questions. I also think it is important to keep the Doc in the loop so he or she can make a good decision about the plan of care.

The goal for CF is to prevent lung damage. It is hard work; One CF doc told me the goal is to get the CF kids as close to normal as other kids; ie "normal weight, normal lung function".

I am always working hard to get my daughter back to baseline, which for her is no or minimal cough so for us a junky cough would be very concerning to me.

I hope that helps. I usually write all my questions down no matter what they are and have them in front of me when I talk to the doctor. I also write answers down on scrap paper, the doc gives me so I don't forget what he says.

 

[Rebjane]

Josette,

Every CF kids is different. I agree with Bill about talking to your son's CF doctor. You are new to this and if you have concerns, call. Don't feel like you are being a pest. You are advocating for your child. Sometimes, I feel like I need a direct line to my daughter's Doctor's office and nursing staff. They are usually very understanding and get that this is a new situation and you will have LOTS of questions. I also think it is important to keep the Doc in the loop so he or she can make a good decision about the plan of care.

The goal for CF is to prevent lung damage. It is hard work; One CF doc told me the goal is to get the CF kids as close to normal as other kids; ie "normal weight, normal lung function".

I am always working hard to get my daughter back to baseline, which for her is no or minimal cough so for us a junky cough would be very concerning to me.

I hope that helps. I usually write all my questions down no matter what they are and have them in front of me when I talk to the doctor. I also write answers down on scrap paper, the doc gives me so I don't forget what he says.

 

[drdanika]

The rule of thumb that our clinic gave us was three days or more of a change in symptoms like increased cough we should call. That might be excessive for some, but better safe then sorry! Pain with deep breathing would definately worry me enough to call.

My daughter was just diagnosed this September too. It's difficult when you are still trying to figure out what baseline is, but it sounds like you want to call so you should. Don't second guess your instincts.

Good luck!

-C

 

[drdanika]

The rule of thumb that our clinic gave us was three days or more of a change in symptoms like increased cough we should call. That might be excessive for some, but better safe then sorry! Pain with deep breathing would definately worry me enough to call.

My daughter was just diagnosed this September too. It's difficult when you are still trying to figure out what baseline is, but it sounds like you want to call so you should. Don't second guess your instincts.

Good luck!

-C

 

[Anomie]

You should get him in for a cat scan. That deep lung pain could be pneumothorax or bronchiectasis. Thats what happens to our little CFer's when they're diagnosed late.

 

[Anomie]

You should get him in for a cat scan. That deep lung pain could be pneumothorax or bronchiectasis. Thats what happens to our little CFer's when they're diagnosed late.