I have a 4 1/2 month old son. He has been a congested "snorty" baby since birth. He was also very fussy. After a few go arounds with the pediatrician they decided that he had reflux so we started him on prevacid but it never really helped. He's also had a really hard time with feedings so we started seeing a speech pathologist, that said he has been gaining weight well and has stayed on the same growth curve since birth. The GI Dr. felt it was more of an "airway" issue so we saw an ENT Dr. The ENT Dr. felt that the irritation on the baby's vocal cords was consistent with reflux. So we just let it go. Then in Feb, he got bronchiolitis and was hospitalized. It took 6 days for him to improve and be released. While in the hospital they found a "shadow" on his lungs on his chest x-ray. Our pediatrician felt it was his thymus gland but the radiologist wanted it checked out because he didn't feel that it was consistent with thymus. So we were referred to a pulmonologist. After our first visit with the pulmonologist we were encouraged. He thought our son looked great and thought his lungs sounded clear so he said he was comfortable waiting and repeating the chest x-ray in 2 weeks. So we waited. Then my son got RSV and was re-admitted to the hospital. They x-rayed his lungs again and the shadow had improved but was still there. They said that it was still in the same spot or pocket. While we were in the hospital the pulmonologist visited us and said he wanted us to do the sweat test to test for Cystic Fibrosis. We were both shocked and confused. I tested negative for the gene during my prenatal screening and my son tested negative when he was screened when he was first born. That said, he has continually had respiratory issues. We're terrified and don't know what to think. Does this sound like CF? What do we do? What if he has it? What is his life going to be like?
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Scared and Confused
- Thread starter mom22
- Start date
I have a 4 1/2 month old son. He has been a congested "snorty" baby since birth. He was also very fussy. After a few go arounds with the pediatrician they decided that he had reflux so we started him on prevacid but it never really helped. He's also had a really hard time with feedings so we started seeing a speech pathologist, that said he has been gaining weight well and has stayed on the same growth curve since birth. The GI Dr. felt it was more of an "airway" issue so we saw an ENT Dr. The ENT Dr. felt that the irritation on the baby's vocal cords was consistent with reflux. So we just let it go. Then in Feb, he got bronchiolitis and was hospitalized. It took 6 days for him to improve and be released. While in the hospital they found a "shadow" on his lungs on his chest x-ray. Our pediatrician felt it was his thymus gland but the radiologist wanted it checked out because he didn't feel that it was consistent with thymus. So we were referred to a pulmonologist. After our first visit with the pulmonologist we were encouraged. He thought our son looked great and thought his lungs sounded clear so he said he was comfortable waiting and repeating the chest x-ray in 2 weeks. So we waited. Then my son got RSV and was re-admitted to the hospital. They x-rayed his lungs again and the shadow had improved but was still there. They said that it was still in the same spot or pocket. While we were in the hospital the pulmonologist visited us and said he wanted us to do the sweat test to test for Cystic Fibrosis. We were both shocked and confused. I tested negative for the gene during my prenatal screening and my son tested negative when he was screened when he was first born. That said, he has continually had respiratory issues. We're terrified and don't know what to think. Does this sound like CF? What do we do? What if he has it? What is his life going to be like?
I have a 4 1/2 month old son. He has been a congested "snorty" baby since birth. He was also very fussy. After a few go arounds with the pediatrician they decided that he had reflux so we started him on prevacid but it never really helped. He's also had a really hard time with feedings so we started seeing a speech pathologist, that said he has been gaining weight well and has stayed on the same growth curve since birth. The GI Dr. felt it was more of an "airway" issue so we saw an ENT Dr. The ENT Dr. felt that the irritation on the baby's vocal cords was consistent with reflux. So we just let it go. Then in Feb, he got bronchiolitis and was hospitalized. It took 6 days for him to improve and be released. While in the hospital they found a "shadow" on his lungs on his chest x-ray. Our pediatrician felt it was his thymus gland but the radiologist wanted it checked out because he didn't feel that it was consistent with thymus. So we were referred to a pulmonologist. After our first visit with the pulmonologist we were encouraged. He thought our son looked great and thought his lungs sounded clear so he said he was comfortable waiting and repeating the chest x-ray in 2 weeks. So we waited. Then my son got RSV and was re-admitted to the hospital. They x-rayed his lungs again and the shadow had improved but was still there. They said that it was still in the same spot or pocket. While we were in the hospital the pulmonologist visited us and said he wanted us to do the sweat test to test for Cystic Fibrosis. We were both shocked and confused. I tested negative for the gene during my prenatal screening and my son tested negative when he was screened when he was first born. That said, he has continually had respiratory issues. We're terrified and don't know what to think. Does this sound like CF? What do we do? What if he has it? What is his life going to be like?
Mommyof2now
New member
I am a mother of a 4 year old with cf diagnosed 1 month after birth they knoew i was a carrier but nothing ever showed up in newborn screening and my son is one of few of false negitives at birth for the disease, my concern was a constant cough, does he have that? also very fluffy soft stool? all cfers vary though
Mommyof2now
New member
I am a mother of a 4 year old with cf diagnosed 1 month after birth they knoew i was a carrier but nothing ever showed up in newborn screening and my son is one of few of false negitives at birth for the disease, my concern was a constant cough, does he have that? also very fluffy soft stool? all cfers vary though
Mommyof2now
New member
I am a mother of a 4 year old with cf diagnosed 1 month after birth they knoew i was a carrier but nothing ever showed up in newborn screening and my son is one of few of false negitives at birth for the disease, my concern was a constant cough, does he have that? also very fluffy soft stool? all cfers vary though
Mommyof2now
New member
my daughter has has rsv and alot of other problems and does not have cf has had acid reflux and ceasers but does not have it but may be a carrier but had a sweat test and so far no cf good luck and i wish you the best!
Mommyof2now
New member
my daughter has has rsv and alot of other problems and does not have cf has had acid reflux and ceasers but does not have it but may be a carrier but had a sweat test and so far no cf good luck and i wish you the best!
Mommyof2now
New member
my daughter has has rsv and alot of other problems and does not have cf has had acid reflux and ceasers but does not have it but may be a carrier but had a sweat test and so far no cf good luck and i wish you the best!
I'm so sorry your son has been so sick. You must be terrified. My daugther as diagnosed with CF at 6 days old. That was horrible. My second daughter doesn't have CF, but had RSV at 7 weeks old and it was so scary.
Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
I hope this isn't the case with you guys, but I do hope you get some answers.
As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
I will pray that he doesn't have it and that you find answers quickly.
Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
I hope this isn't the case with you guys, but I do hope you get some answers.
As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
I will pray that he doesn't have it and that you find answers quickly.
I'm so sorry your son has been so sick. You must be terrified. My daugther as diagnosed with CF at 6 days old. That was horrible. My second daughter doesn't have CF, but had RSV at 7 weeks old and it was so scary.
Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
I hope this isn't the case with you guys, but I do hope you get some answers.
As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
I will pray that he doesn't have it and that you find answers quickly.
Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
I hope this isn't the case with you guys, but I do hope you get some answers.
As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
I will pray that he doesn't have it and that you find answers quickly.
I'm so sorry your son has been so sick. You must be terrified. My daugther as diagnosed with CF at 6 days old. That was horrible. My second daughter doesn't have CF, but had RSV at 7 weeks old and it was so scary.
<br />Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
<br />You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
<br />I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
<br />I hope this isn't the case with you guys, but I do hope you get some answers.
<br />As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
<br />And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
<br />Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
<br />I will pray that he doesn't have it and that you find answers quickly.
<br />
<br />Unfortunately, CF presents differently in every patient. Some have lung issues and no digestive issues and vice versa.
<br />You tested negative as a carrier, but they usually only test for the top 90 mutations and there are over 1600 with more being discovered often.
<br />I would think your son, if he had CF, would have set off the newborn screening, but as stated by "mommyof2now" there can be false negatives.
<br />I hope this isn't the case with you guys, but I do hope you get some answers.
<br />As for what you will do - you will be okay. I promise. You will take care of your son to the best of your ability. There has been alot of progress with CF treatments in the last few years. In fact, there are 2 new drugs moving through the pipeline right now that are VERY promising.
<br />And your son will have a normal life - just with some differences. There are treatments and precautions, but he will be a kid just like any other kid.
<br />Until you know for sure, try not to worry. And please only read about CF on CFF.org. other information on the web is very outdated and will only upset you. Trust me. I googled and googled CF until I was a puddle on the floor. CFF.org is the best place to go.
<br />I will pray that he doesn't have it and that you find answers quickly.
<br />
Mommyof2now
New member
1
Mommyof2now
New member
1
Mommyof2now
New member
1
Thank you all so much for replying. I haven't noticed anything strange or different with his stools and he doesn't taste salty to me but I know that everyone presents with different symptoms so just because he hasn't had these issues doesn't mean he doesn't have CF. He's very pale, which I know isn't indicitive of anything, but it's one of the things I've noticed about him. He just doesn't look "healthy" like my daughter does. I just can't wait to get this sweat test done and to get some results. I think the waiting is torture. Is the sweat test typically conclusive? Our peditrician and pulmonologist feel that he doesn't have CF but want to do the test to "rule it out".
Thank you all so much for replying. I haven't noticed anything strange or different with his stools and he doesn't taste salty to me but I know that everyone presents with different symptoms so just because he hasn't had these issues doesn't mean he doesn't have CF. He's very pale, which I know isn't indicitive of anything, but it's one of the things I've noticed about him. He just doesn't look "healthy" like my daughter does. I just can't wait to get this sweat test done and to get some results. I think the waiting is torture. Is the sweat test typically conclusive? Our peditrician and pulmonologist feel that he doesn't have CF but want to do the test to "rule it out".