Baby's first cold

M

momtocrazel

New member
Hello.
new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline drops and steam for the congestion. It is one week later and she still has a little runny nose/congestion and ocassional cough (usu at night or first thing in the morning.) I called the pediatrician's office and they said she did not have to come in. I don't want to rush her in everytime she gets a cold but i also don't want to miss anything. Any suggestions would be helpful. Thanks.
 
M

momtocrazel

New member
Hello.
new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline drops and steam for the congestion. It is one week later and she still has a little runny nose/congestion and ocassional cough (usu at night or first thing in the morning.) I called the pediatrician's office and they said she did not have to come in. I don't want to rush her in everytime she gets a cold but i also don't want to miss anything. Any suggestions would be helpful. Thanks.
 
M

momtocrazel

New member
Hello.
<br />new to this site. my daughter was dx with CF via nbs. She is almost 5 months. She is getting over (i think) her first cold. I think her symptoms are "normal." She started with a runny nose and cough. She is nursing/sleeping fine and seems pretty happy. We have been doing saline drops and steam for the congestion. It is one week later and she still has a little runny nose/congestion and ocassional cough (usu at night or first thing in the morning.) I called the pediatrician's office and they said she did not have to come in. I don't want to rush her in everytime she gets a cold but i also don't want to miss anything. Any suggestions would be helpful. Thanks.
 
A

ashmomo

New member
Welcome! SOrry you have to be here! Even though you will get LOTS of great advice here!

Do you do CPT/clapping to clear the lungs?

Sounds pretty typical right now...as long as she is not coughing all day or anything like that. I would suggest some CPT if you are not doing any yet though. Do you have a CF clinic doctor you see?
 
A

ashmomo

New member
Welcome! SOrry you have to be here! Even though you will get LOTS of great advice here!

Do you do CPT/clapping to clear the lungs?

Sounds pretty typical right now...as long as she is not coughing all day or anything like that. I would suggest some CPT if you are not doing any yet though. Do you have a CF clinic doctor you see?
 
A

ashmomo

New member
Welcome! SOrry you have to be here! Even though you will get LOTS of great advice here!
<br />
<br />Do you do CPT/clapping to clear the lungs?
<br />
<br />Sounds pretty typical right now...as long as she is not coughing all day or anything like that. I would suggest some CPT if you are not doing any yet though. Do you have a CF clinic doctor you see?
 
M

Mommafirst

Guest
Welcome to the site.

I know that first cold (aww let's be honest, and every cold hereafter) will make you crazy. CF kids get colds like every other kid. Unfortunatly, there are times when the cold will turn into more because of the bacteria they harbor in their lungs.

Its probably a better idea to call the CF center rather than the ped. Peds are not accoustomed to giving out abx for colds, but CF centers will want to start them on the abx if the cough lasts more than a few days in order to prevent the bacteria from going into overdrive. The more mucus a CF patient produces, the more the bacteria multiply -- its a beautiful environment for the bacteria. So keeping the bacteria numbers down the abx may seem counter-intuitive to your ped, but common sense to your CF doc.

I hope she's feeling better and this doesn't turn into anything concerning.
 
M

Mommafirst

Guest
Welcome to the site.

I know that first cold (aww let's be honest, and every cold hereafter) will make you crazy. CF kids get colds like every other kid. Unfortunatly, there are times when the cold will turn into more because of the bacteria they harbor in their lungs.

Its probably a better idea to call the CF center rather than the ped. Peds are not accoustomed to giving out abx for colds, but CF centers will want to start them on the abx if the cough lasts more than a few days in order to prevent the bacteria from going into overdrive. The more mucus a CF patient produces, the more the bacteria multiply -- its a beautiful environment for the bacteria. So keeping the bacteria numbers down the abx may seem counter-intuitive to your ped, but common sense to your CF doc.

I hope she's feeling better and this doesn't turn into anything concerning.
 
M

Mommafirst

Guest
Welcome to the site.
<br />
<br />I know that first cold (aww let's be honest, and every cold hereafter) will make you crazy. CF kids get colds like every other kid. Unfortunatly, there are times when the cold will turn into more because of the bacteria they harbor in their lungs.
<br />
<br />Its probably a better idea to call the CF center rather than the ped. Peds are not accoustomed to giving out abx for colds, but CF centers will want to start them on the abx if the cough lasts more than a few days in order to prevent the bacteria from going into overdrive. The more mucus a CF patient produces, the more the bacteria multiply -- its a beautiful environment for the bacteria. So keeping the bacteria numbers down the abx may seem counter-intuitive to your ped, but common sense to your CF doc.
<br />
<br />I hope she's feeling better and this doesn't turn into anything concerning.
 
M

momtocrazel

New member
ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about starting antibiotics as i remembered the cf team mentioning this as course for tx if the cough lasts a couple of days (which is what prompted my calls to my ped and cf clinic). I am unsure though if they will want to start antibiotics as the cough is minimal and at day 7 of the cold i am questioning if she has one at all. But i will send an e-mail to cf clinic to forward to our cf doc for his info. she just did have a throat culture the day before she got the cold and was negative.
also, when did your kids start lung specific txs? it seems that some "asymptomatic" infants were started on pulmozyme and hts. our doc has not even mentioned this to us. what are your thoughts? i would like to be proactive not reactive. doesn't make sense to wait to tx until they get sick. isn't that kinda the point for nbs? thanks for any info/opinions/experiences, etc.
 
M

momtocrazel

New member
ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about starting antibiotics as i remembered the cf team mentioning this as course for tx if the cough lasts a couple of days (which is what prompted my calls to my ped and cf clinic). I am unsure though if they will want to start antibiotics as the cough is minimal and at day 7 of the cold i am questioning if she has one at all. But i will send an e-mail to cf clinic to forward to our cf doc for his info. she just did have a throat culture the day before she got the cold and was negative.
also, when did your kids start lung specific txs? it seems that some "asymptomatic" infants were started on pulmozyme and hts. our doc has not even mentioned this to us. what are your thoughts? i would like to be proactive not reactive. doesn't make sense to wait to tx until they get sick. isn't that kinda the point for nbs? thanks for any info/opinions/experiences, etc.
 
M

momtocrazel

New member
ashmomo & mommafirst - we are doing the CPT. We do have a CF doc but he comes to town only once a month. I called our CF team clinic coordinator and she directed me to our pediatrician (who is seems to have better luck than i communicating with our cf pulmonologist). I have been curious about starting antibiotics as i remembered the cf team mentioning this as course for tx if the cough lasts a couple of days (which is what prompted my calls to my ped and cf clinic). I am unsure though if they will want to start antibiotics as the cough is minimal and at day 7 of the cold i am questioning if she has one at all. But i will send an e-mail to cf clinic to forward to our cf doc for his info. she just did have a throat culture the day before she got the cold and was negative.
<br />also, when did your kids start lung specific txs? it seems that some "asymptomatic" infants were started on pulmozyme and hts. our doc has not even mentioned this to us. what are your thoughts? i would like to be proactive not reactive. doesn't make sense to wait to tx until they get sick. isn't that kinda the point for nbs? thanks for any info/opinions/experiences, etc.
 
R

Ratatosk

Administrator
Staff member
With DS we started CPT with albuterol/atrovent nebs when he was a little over a week old. While on maternity leave I did 4 treatments a day. This was without any symptoms. When I went back to work we switched to 3 treatments a day unless ds had a cold or was under the weather then we bump it up again. He got put on Tobi at 3 months when he cultured pseudo. Pulmozyme at 2 1/2 years of age.

Our CF doctor is very reactive. We're to call if DS has a cough and they determine a course of action. Usually DS has been put on an antibiotic.

Our local clinic is too reactive and don't suggest CPT or the vest to their patients if they don't have symptoms. And they seem to think a cough is just normal, so they don't usually treat it.
 
R

Ratatosk

Administrator
Staff member
With DS we started CPT with albuterol/atrovent nebs when he was a little over a week old. While on maternity leave I did 4 treatments a day. This was without any symptoms. When I went back to work we switched to 3 treatments a day unless ds had a cold or was under the weather then we bump it up again. He got put on Tobi at 3 months when he cultured pseudo. Pulmozyme at 2 1/2 years of age.

Our CF doctor is very reactive. We're to call if DS has a cough and they determine a course of action. Usually DS has been put on an antibiotic.

Our local clinic is too reactive and don't suggest CPT or the vest to their patients if they don't have symptoms. And they seem to think a cough is just normal, so they don't usually treat it.
 
R

Ratatosk

Administrator
Staff member
With DS we started CPT with albuterol/atrovent nebs when he was a little over a week old. While on maternity leave I did 4 treatments a day. This was without any symptoms. When I went back to work we switched to 3 treatments a day unless ds had a cold or was under the weather then we bump it up again. He got put on Tobi at 3 months when he cultured pseudo. Pulmozyme at 2 1/2 years of age.
<br />
<br />Our CF doctor is very reactive. We're to call if DS has a cough and they determine a course of action. Usually DS has been put on an antibiotic.
<br />
<br />Our local clinic is too reactive and don't suggest CPT or the vest to their patients if they don't have symptoms. And they seem to think a cough is just normal, so they don't usually treat it.
 
M

momtocrazel

New member
mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?
 
M

momtocrazel

New member
mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?
 
M

momtocrazel

New member
mommafirst - i think i might have seen another post/topic that your daughter has w1282x? my baby girl does too. what is her 2nd mutation? are you following the ataluren study? i was told that they may begin a trial for those under 6 in the near future?
 
M

Mommafirst

Guest
Yes, my daughter has w1282x, her other one is y1032c.

I'm following the atalauren, and hoping that by 2012 they will start the under six study, right when Alyssa turns 6.
 
M

Mommafirst

Guest
Yes, my daughter has w1282x, her other one is y1032c.

I'm following the atalauren, and hoping that by 2012 they will start the under six study, right when Alyssa turns 6.
 
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