Coughing

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Vampy

New member
We all know coughing can get pretty intense, loud and violent. My coughing once a while ends up giving me back pains. Sooo my question is, what are some ways you guys have found to ease the coughing problem. Medicine or not, i still cough. I wake up my boyfriend, Vaul, when i cuddle with my son.
Also, side note, my son was tested for CF, and doesn't have it. Though he has the most common cf gene, g551d i think its called. And he has a chronic cough hes had since he was born and has salty sweat, i wonder if he could get these as a side effect of just having that 1 gene. Thoughts?
 
V

Vampy

New member
We all know coughing can get pretty intense, loud and violent. My coughing once a while ends up giving me back pains. Sooo my question is, what are some ways you guys have found to ease the coughing problem. Medicine or not, i still cough. I wake up my boyfriend, Vaul, when i cuddle with my son.
Also, side note, my son was tested for CF, and doesn't have it. Though he has the most common cf gene, g551d i think its called. And he has a chronic cough hes had since he was born and has salty sweat, i wonder if he could get these as a side effect of just having that 1 gene. Thoughts?
 
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jbrandyn

New member
Air purifier and humidifier with salt water really helped me at night.
Also since CF has a hetero-zygote advantage only having one copy of the gene means you have an increased resistance to cholera ( the same way that one copy of sickle cell gives resistance to malaria). But sometimes even only having the one copy can still have adverse affects (luckily not to the extent of CF). I am not completely sure which CF mutations are problematic with only one copy, but your CF doc might know.
 
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jbrandyn

New member
Air purifier and humidifier with salt water really helped me at night.
Also since CF has a hetero-zygote advantage only having one copy of the gene means you have an increased resistance to cholera ( the same way that one copy of sickle cell gives resistance to malaria). But sometimes even only having the one copy can still have adverse affects (luckily not to the extent of CF). I am not completely sure which CF mutations are problematic with only one copy, but your CF doc might know.
 
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mamaScarlett

Active member
My docs have said there are reports/theories about symptomatic carriers. People that only have one copy, like your son aparently, but have increased cf like symptoms. I believe in my family there are lots of symptomatic carriers, based on who I know is a carrier, who isn't, who has certain issues (like sinus issues, polyps, etc). This hasn't been extensively tested yet though.
If you have finished the proper testing, then personally I'd treat him like any non-cf child. Watch for symptoms of anything that comes up, and take him to the doctor as needed. In time there may be more information out there to help you, and all of us.
As for coughing, thats pretty broad but for nighttime coughing I've found that eating a handful of salty chips before bed actually helps!
I never take cough syrup during the day, but if I'm really sick and being vigilant with my chest pt, my doctor ok's certain cough meds. She feels that sleep is just as valuable for recovery as coughing up and medicines are. You'd have to check with your own docs though.
 
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mamaScarlett

Active member
My docs have said there are reports/theories about symptomatic carriers. People that only have one copy, like your son aparently, but have increased cf like symptoms. I believe in my family there are lots of symptomatic carriers, based on who I know is a carrier, who isn't, who has certain issues (like sinus issues, polyps, etc). This hasn't been extensively tested yet though.
If you have finished the proper testing, then personally I'd treat him like any non-cf child. Watch for symptoms of anything that comes up, and take him to the doctor as needed. In time there may be more information out there to help you, and all of us.
As for coughing, thats pretty broad but for nighttime coughing I've found that eating a handful of salty chips before bed actually helps!
I never take cough syrup during the day, but if I'm really sick and being vigilant with my chest pt, my doctor ok's certain cough meds. She feels that sleep is just as valuable for recovery as coughing up and medicines are. You'd have to check with your own docs though.
 
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Dayna1

New member
This may sound silly, however, last visit to the hospital, my daughter was told by the Pulm. Therapist that when she had coughing fits guzzle down a bottle of water or two, everytime she gets coughing fits at nite, she drinks her bottle of water and within 10 or 15 minutes its gone. Something to do with hydration , dont remember exactly what he said but I will look it up an post it.. Its harmless but worth a try a try...
 
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Dayna1

New member
This may sound silly, however, last visit to the hospital, my daughter was told by the Pulm. Therapist that when she had coughing fits guzzle down a bottle of water or two, everytime she gets coughing fits at nite, she drinks her bottle of water and within 10 or 15 minutes its gone. Something to do with hydration , dont remember exactly what he said but I will look it up an post it.. Its harmless but worth a try a try...
 
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MCGrad2006

Guest
I have found that downing a lot of water, maybe not two bottles (I would be peeing all night if i did that) sometimes does help me. Also Albuterol helps me sometimes. It depends on what kind of cough it is though.
 
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MCGrad2006

Guest
I have found that downing a lot of water, maybe not two bottles (I would be peeing all night if i did that) sometimes does help me. Also Albuterol helps me sometimes. It depends on what kind of cough it is though.
 
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Printer

Active member
CFF has set up a program for FREE FULL CF SEQUENCING for people with one known mutation. It would be wise to look into this program and have son retested for FREE.

Bill
 
P

Printer

Active member
CFF has set up a program for FREE FULL CF SEQUENCING for people with one known mutation. It would be wise to look into this program and have son retested for FREE.

Bill
 
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imported_Momto2

New member
I like an extra nebbie, tussin CF, a cold coke, cold slightly humidified air, toss back a few ibuprofin, maybe some prednisone, and if things get really sucky, a hydrocodone. I know what your talking about. Constantly broke ribs several times a year for a decade due to uncontrolled coughing, especially at night. I elevate the head of the bed slightly, that seems to help. Have an air purifyer too. The steam from hot showers can help too, and make super sure you are hydrated!
 
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imported_Momto2

New member
I like an extra nebbie, tussin CF, a cold coke, cold slightly humidified air, toss back a few ibuprofin, maybe some prednisone, and if things get really sucky, a hydrocodone. I know what your talking about. Constantly broke ribs several times a year for a decade due to uncontrolled coughing, especially at night. I elevate the head of the bed slightly, that seems to help. Have an air purifyer too. The steam from hot showers can help too, and make super sure you are hydrated!
 
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Vampy

New member
Broke ribs?? Oh lord!! If that isn't enough to scare you i don't know what is. I've had rib pains like pulled muscles and pluersy too. I might try a few of those ideas. Now extra question, i was always told my a CF dr that NEVER EVER EVER EVER take any cough medicine!! i had to go through school like tests, finals, everything, WORK at a restraunt because i was always told to NEVER take cough meds? Thats why its so hard for me to buy over the counter meds O.O i even found one that loosens cough and i was told that i couldnt take it. Now that im at a new cf clinic i will have to ask them. They told me i was not to take musinex also.
As for my son, i think i'm going to make an appointment and find out if he has anything like asthma also.
Honestly i have learned more about Cystic Fibrosis on here, then i have in my old cf clinic. My last dr was so conventional that there was new meds for years and we had no idea, he wouldnt tell us. when pulmacort came about, he never told us, we found out somehow but it wasn't by him.
 
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Vampy

New member
Broke ribs?? Oh lord!! If that isn't enough to scare you i don't know what is. I've had rib pains like pulled muscles and pluersy too. I might try a few of those ideas. Now extra question, i was always told my a CF dr that NEVER EVER EVER EVER take any cough medicine!! i had to go through school like tests, finals, everything, WORK at a restraunt because i was always told to NEVER take cough meds? Thats why its so hard for me to buy over the counter meds O.O i even found one that loosens cough and i was told that i couldnt take it. Now that im at a new cf clinic i will have to ask them. They told me i was not to take musinex also.
As for my son, i think i'm going to make an appointment and find out if he has anything like asthma also.
Honestly i have learned more about Cystic Fibrosis on here, then i have in my old cf clinic. My last dr was so conventional that there was new meds for years and we had no idea, he wouldnt tell us. when pulmacort came about, he never told us, we found out somehow but it wasn't by him.
 
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MCGrad2006

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Vampy</b></i> Broke ribs?? Oh lord!! If that isn't enough to scare you i don't know what is. I've had rib pains like pulled muscles and pluersy too. I might try a few of those ideas. Now extra question, i was always told my a CF dr that NEVER EVER EVER EVER take any cough medicine!! i had to go through school like tests, finals, everything, WORK at a restraunt because i was always told to NEVER take cough meds? Thats why its so hard for me to buy over the counter meds O.O i even found one that loosens cough and i was told that i couldnt take it. Now that im at a new cf clinic i will have to ask them. They told me i was not to take musinex also. As for my son, i think i'm going to make an appointment and find out if he has anything like asthma also. Honestly i have learned more about Cystic Fibrosis on here, then i have in my old cf clinic. My last dr was so conventional that there was new meds for years and we had no idea, he wouldnt tell us. when pulmacort came about, he never told us, we found out somehow but it wasn't by him.</end quote>


My doctor also said NO cough meds. But if it is really keeping you up at night and you are getting sicker because of it, just take it. I also take the Tussin CF like someone else said. But although my doctor would prefer me NOT To take it at all, he does not care if it keeps me up. He will actually advise me TO take it so that I do not get sicker, more tired, yada yada...
 
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MCGrad2006

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Vampy</b></i> Broke ribs?? Oh lord!! If that isn't enough to scare you i don't know what is. I've had rib pains like pulled muscles and pluersy too. I might try a few of those ideas. Now extra question, i was always told my a CF dr that NEVER EVER EVER EVER take any cough medicine!! i had to go through school like tests, finals, everything, WORK at a restraunt because i was always told to NEVER take cough meds? Thats why its so hard for me to buy over the counter meds O.O i even found one that loosens cough and i was told that i couldnt take it. Now that im at a new cf clinic i will have to ask them. They told me i was not to take musinex also. As for my son, i think i'm going to make an appointment and find out if he has anything like asthma also. Honestly i have learned more about Cystic Fibrosis on here, then i have in my old cf clinic. My last dr was so conventional that there was new meds for years and we had no idea, he wouldnt tell us. when pulmacort came about, he never told us, we found out somehow but it wasn't by him.</end quote>


My doctor also said NO cough meds. But if it is really keeping you up at night and you are getting sicker because of it, just take it. I also take the Tussin CF like someone else said. But although my doctor would prefer me NOT To take it at all, he does not care if it keeps me up. He will actually advise me TO take it so that I do not get sicker, more tired, yada yada...
 
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