When do you call the CF clinic?

Rebjane · Jan 14, 2008

Lauren,

I have one child who does not have CF. He would absolutely get colds and cough together, rarely would he need antibiotics as a baby, maybe once the first year for an ear infection. Babies do have little airways, it's very hard to differentiate if the wheeze is in their throat, nose, upper airway or what. My daughter with CF, I remember hearing her wheeze as a baby, I was so worried; but it was from her nose. Wierd.

Our CF doctor is a pediatrician as well as the director of the CF clinic. So I usually call him if I have any questions or am doubting myself about what is going on. OUr regular pediatrician's office is closer than the CF clinic. So I could bring my daughter in have the regular pediatrician look at her, even do a swab if I request and have it couriered over to the CF clinic lab for testing. Also, if I was very concerned I would tell him to check with her CF doctor before ordering something.

The first year or 2 is very hard, the baby can't tell you how they are feeling and you do not know how particular viruses/cold will affect your baby. Go with your gut and call. Keep up with the CPT albuterol.

Rebjane · Jan 14, 2008

Lauren,

I have one child who does not have CF. He would absolutely get colds and cough together, rarely would he need antibiotics as a baby, maybe once the first year for an ear infection. Babies do have little airways, it's very hard to differentiate if the wheeze is in their throat, nose, upper airway or what. My daughter with CF, I remember hearing her wheeze as a baby, I was so worried; but it was from her nose. Wierd.

Our CF doctor is a pediatrician as well as the director of the CF clinic. So I usually call him if I have any questions or am doubting myself about what is going on. OUr regular pediatrician's office is closer than the CF clinic. So I could bring my daughter in have the regular pediatrician look at her, even do a swab if I request and have it couriered over to the CF clinic lab for testing. Also, if I was very concerned I would tell him to check with her CF doctor before ordering something.

The first year or 2 is very hard, the baby can't tell you how they are feeling and you do not know how particular viruses/cold will affect your baby. Go with your gut and call. Keep up with the CPT albuterol.

Rebjane · Jan 14, 2008

Lauren,

I have one child who does not have CF. He would absolutely get colds and cough together, rarely would he need antibiotics as a baby, maybe once the first year for an ear infection. Babies do have little airways, it's very hard to differentiate if the wheeze is in their throat, nose, upper airway or what. My daughter with CF, I remember hearing her wheeze as a baby, I was so worried; but it was from her nose. Wierd.

Our CF doctor is a pediatrician as well as the director of the CF clinic. So I usually call him if I have any questions or am doubting myself about what is going on. OUr regular pediatrician's office is closer than the CF clinic. So I could bring my daughter in have the regular pediatrician look at her, even do a swab if I request and have it couriered over to the CF clinic lab for testing. Also, if I was very concerned I would tell him to check with her CF doctor before ordering something.

The first year or 2 is very hard, the baby can't tell you how they are feeling and you do not know how particular viruses/cold will affect your baby. Go with your gut and call. Keep up with the CPT albuterol.

Rebjane · Jan 14, 2008

Lauren,

I have one child who does not have CF. He would absolutely get colds and cough together, rarely would he need antibiotics as a baby, maybe once the first year for an ear infection. Babies do have little airways, it's very hard to differentiate if the wheeze is in their throat, nose, upper airway or what. My daughter with CF, I remember hearing her wheeze as a baby, I was so worried; but it was from her nose. Wierd.

Our CF doctor is a pediatrician as well as the director of the CF clinic. So I usually call him if I have any questions or am doubting myself about what is going on. OUr regular pediatrician's office is closer than the CF clinic. So I could bring my daughter in have the regular pediatrician look at her, even do a swab if I request and have it couriered over to the CF clinic lab for testing. Also, if I was very concerned I would tell him to check with her CF doctor before ordering something.

The first year or 2 is very hard, the baby can't tell you how they are feeling and you do not know how particular viruses/cold will affect your baby. Go with your gut and call. Keep up with the CPT albuterol.

Rebjane · Jan 14, 2008

Lauren,

I have one child who does not have CF. He would absolutely get colds and cough together, rarely would he need antibiotics as a baby, maybe once the first year for an ear infection. Babies do have little airways, it's very hard to differentiate if the wheeze is in their throat, nose, upper airway or what. My daughter with CF, I remember hearing her wheeze as a baby, I was so worried; but it was from her nose. Wierd.

Our CF doctor is a pediatrician as well as the director of the CF clinic. So I usually call him if I have any questions or am doubting myself about what is going on. OUr regular pediatrician's office is closer than the CF clinic. So I could bring my daughter in have the regular pediatrician look at her, even do a swab if I request and have it couriered over to the CF clinic lab for testing. Also, if I was very concerned I would tell him to check with her CF doctor before ordering something.

The first year or 2 is very hard, the baby can't tell you how they are feeling and you do not know how particular viruses/cold will affect your baby. Go with your gut and call. Keep up with the CPT albuterol.

pjspiegle · Jan 14, 2008

I agree with the advise of making sure you have a peditrician who will communicate well with your pulmo docs. Our peditrician was great that way, he would often give me advice of what to do to help make me feel better, then call the pulmonary team, and call me back and change his advise if necessary after talking to the pulmonary team. He was so great and had no problems consulting and admitting that he wasn't sure what to do without consulting first. He even called the pulmonary docs with me in his office if he wasn't sure.

Then, if you can feel stuff moving, he probably is wheezing. I would put my ear on his chest and listen if you don't have a stethoscope, which I quickly invested in so that I could get use to my sons lung sounds and know for myself when something was different or changed. I don't know where you live, but we are having a terrible year with RSV here where we are so you might want to make sure it is just a cold and not the RSV, which is bad for normal healthy babies let alone those with issues.

My best advice to all new moms is to follow your instincts! God gave us moms instincts for a reason. I was in my docs office practically every week with my first son and he did not have CF, not sure what I would have done if he had CF and was the first, poor doc probably would have really hated me.

pjspiegle · Jan 14, 2008

I agree with the advise of making sure you have a peditrician who will communicate well with your pulmo docs. Our peditrician was great that way, he would often give me advice of what to do to help make me feel better, then call the pulmonary team, and call me back and change his advise if necessary after talking to the pulmonary team. He was so great and had no problems consulting and admitting that he wasn't sure what to do without consulting first. He even called the pulmonary docs with me in his office if he wasn't sure.

Then, if you can feel stuff moving, he probably is wheezing. I would put my ear on his chest and listen if you don't have a stethoscope, which I quickly invested in so that I could get use to my sons lung sounds and know for myself when something was different or changed. I don't know where you live, but we are having a terrible year with RSV here where we are so you might want to make sure it is just a cold and not the RSV, which is bad for normal healthy babies let alone those with issues.

My best advice to all new moms is to follow your instincts! God gave us moms instincts for a reason. I was in my docs office practically every week with my first son and he did not have CF, not sure what I would have done if he had CF and was the first, poor doc probably would have really hated me.

pjspiegle · Jan 14, 2008

I agree with the advise of making sure you have a peditrician who will communicate well with your pulmo docs. Our peditrician was great that way, he would often give me advice of what to do to help make me feel better, then call the pulmonary team, and call me back and change his advise if necessary after talking to the pulmonary team. He was so great and had no problems consulting and admitting that he wasn't sure what to do without consulting first. He even called the pulmonary docs with me in his office if he wasn't sure.

Then, if you can feel stuff moving, he probably is wheezing. I would put my ear on his chest and listen if you don't have a stethoscope, which I quickly invested in so that I could get use to my sons lung sounds and know for myself when something was different or changed. I don't know where you live, but we are having a terrible year with RSV here where we are so you might want to make sure it is just a cold and not the RSV, which is bad for normal healthy babies let alone those with issues.

My best advice to all new moms is to follow your instincts! God gave us moms instincts for a reason. I was in my docs office practically every week with my first son and he did not have CF, not sure what I would have done if he had CF and was the first, poor doc probably would have really hated me.

pjspiegle · Jan 14, 2008

I agree with the advise of making sure you have a peditrician who will communicate well with your pulmo docs. Our peditrician was great that way, he would often give me advice of what to do to help make me feel better, then call the pulmonary team, and call me back and change his advise if necessary after talking to the pulmonary team. He was so great and had no problems consulting and admitting that he wasn't sure what to do without consulting first. He even called the pulmonary docs with me in his office if he wasn't sure.

Then, if you can feel stuff moving, he probably is wheezing. I would put my ear on his chest and listen if you don't have a stethoscope, which I quickly invested in so that I could get use to my sons lung sounds and know for myself when something was different or changed. I don't know where you live, but we are having a terrible year with RSV here where we are so you might want to make sure it is just a cold and not the RSV, which is bad for normal healthy babies let alone those with issues.

My best advice to all new moms is to follow your instincts! God gave us moms instincts for a reason. I was in my docs office practically every week with my first son and he did not have CF, not sure what I would have done if he had CF and was the first, poor doc probably would have really hated me.

pjspiegle · Jan 14, 2008

I agree with the advise of making sure you have a peditrician who will communicate well with your pulmo docs. Our peditrician was great that way, he would often give me advice of what to do to help make me feel better, then call the pulmonary team, and call me back and change his advise if necessary after talking to the pulmonary team. He was so great and had no problems consulting and admitting that he wasn't sure what to do without consulting first. He even called the pulmonary docs with me in his office if he wasn't sure.

Then, if you can feel stuff moving, he probably is wheezing. I would put my ear on his chest and listen if you don't have a stethoscope, which I quickly invested in so that I could get use to my sons lung sounds and know for myself when something was different or changed. I don't know where you live, but we are having a terrible year with RSV here where we are so you might want to make sure it is just a cold and not the RSV, which is bad for normal healthy babies let alone those with issues.

My best advice to all new moms is to follow your instincts! God gave us moms instincts for a reason. I was in my docs office practically every week with my first son and he did not have CF, not sure what I would have done if he had CF and was the first, poor doc probably would have really hated me.

Rebjane · Jan 15, 2008