Undiagnosed, but worried.

[NixxonsMama]

Hi there,
I am new to this forum, and new to the whole idea of cystic fibrosis.. my 9 month old son has been in and out of the hospital for his whole little life. He has had repeated lung, sinus, and ear infections.. he never has a cough but constantly throws up mucus.. After his most recent hospital stay the doctor requested for him to have a sweat test.. I had no idea what this was but after tiny bit of research quickly found my answer.. but everything I seem to find says that the main symptom of CF is persistant cough.. which my son doesn't have.. just wondering if anyone has any advice?

 

[NixxonsMama]

Hi there,
I am new to this forum, and new to the whole idea of cystic fibrosis.. my 9 month old son has been in and out of the hospital for his whole little life. He has had repeated lung, sinus, and ear infections.. he never has a cough but constantly throws up mucus.. After his most recent hospital stay the doctor requested for him to have a sweat test.. I had no idea what this was but after tiny bit of research quickly found my answer.. but everything I seem to find says that the main symptom of CF is persistant cough.. which my son doesn't have.. just wondering if anyone has any advice?

 

[NixxonsMama]

Hi there,
<br />I am new to this forum, and new to the whole idea of cystic fibrosis.. my 9 month old son has been in and out of the hospital for his whole little life. He has had repeated lung, sinus, and ear infections.. he never has a cough but constantly throws up mucus.. After his most recent hospital stay the doctor requested for him to have a sweat test.. I had no idea what this was but after tiny bit of research quickly found my answer.. but everything I seem to find says that the main symptom of CF is persistant cough.. which my son doesn't have.. just wondering if anyone has any advice?

 

[Mommafirst]

Persistent cough is not the main symptom, and at 9 months its very possible to not cough much or at all. I hope you get answers. Waiting is a hard thing to do.

 

[Mommafirst]

Persistent cough is not the main symptom, and at 9 months its very possible to not cough much or at all. I hope you get answers. Waiting is a hard thing to do.

 

[Mommafirst]

Persistent cough is not the main symptom, and at 9 months its very possible to not cough much or at all. I hope you get answers. Waiting is a hard thing to do.

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[NixxonsMama]

Oh wow.. I didnt know.. seems everything i find says that.. is there anything else i should be aware of? any symptoms i could watch for?

 

[martysmom]

So sorry that he has been sick so much! Poor little guy! How are his stools and his weight gain? In most kids (not all) with CF have greasy bulky stools and do not gain weight as quickly. Sometimes this happens later on for some kids. At 9 months he probably wouldn't have a persistant cough so I think the sweat test is a great idea. If it is negative then you can explore different answers. If it is borderline of positive then request a genetic test. Glad to hear that the doctor is on top of this! Best wishes to you and your little guy!

 

[martysmom]

So sorry that he has been sick so much! Poor little guy! How are his stools and his weight gain? In most kids (not all) with CF have greasy bulky stools and do not gain weight as quickly. Sometimes this happens later on for some kids. At 9 months he probably wouldn't have a persistant cough so I think the sweat test is a great idea. If it is negative then you can explore different answers. If it is borderline of positive then request a genetic test. Glad to hear that the doctor is on top of this! Best wishes to you and your little guy!

 

[martysmom]

So sorry that he has been sick so much! Poor little guy! How are his stools and his weight gain? In most kids (not all) with CF have greasy bulky stools and do not gain weight as quickly. Sometimes this happens later on for some kids. At 9 months he probably wouldn't have a persistant cough so I think the sweat test is a great idea. If it is negative then you can explore different answers. If it is borderline of positive then request a genetic test. Glad to hear that the doctor is on top of this! Best wishes to you and your little guy!

 

[NixxonsMama]

hmmm well i think his stools have been pretty normal.. however he is my first and i havent had much experience with infant stools.. haha.. his weight gain has been poor.. only weighing 17lbs at 9 months.. but he also has reflux which has caused issues with weight gain.. does it effect the lungs more? they keep telling me that his lungs sound clear but really arent, because he keeps throwing up mucus.. but it all seems so odd to me.. hes on pulmicort and ventilin in the mask which makes him throw up more.. but they tell me this is good.. good for him to get all that yucky stuff out.. are ear infections any kind of sign? hes had repeated ear infections since he was about 10 weeks old.. and thanks to those who have responded, and in advance to those who do.. any information is appreciated!

 

[NixxonsMama]

hmmm well i think his stools have been pretty normal.. however he is my first and i havent had much experience with infant stools.. haha.. his weight gain has been poor.. only weighing 17lbs at 9 months.. but he also has reflux which has caused issues with weight gain.. does it effect the lungs more? they keep telling me that his lungs sound clear but really arent, because he keeps throwing up mucus.. but it all seems so odd to me.. hes on pulmicort and ventilin in the mask which makes him throw up more.. but they tell me this is good.. good for him to get all that yucky stuff out.. are ear infections any kind of sign? hes had repeated ear infections since he was about 10 weeks old.. and thanks to those who have responded, and in advance to those who do.. any information is appreciated!

 

[NixxonsMama]

hmmm well i think his stools have been pretty normal.. however he is my first and i havent had much experience with infant stools.. haha.. his weight gain has been poor.. only weighing 17lbs at 9 months.. but he also has reflux which has caused issues with weight gain.. does it effect the lungs more? they keep telling me that his lungs sound clear but really arent, because he keeps throwing up mucus.. but it all seems so odd to me.. hes on pulmicort and ventilin in the mask which makes him throw up more.. but they tell me this is good.. good for him to get all that yucky stuff out.. are ear infections any kind of sign? hes had repeated ear infections since he was about 10 weeks old.. and thanks to those who have responded, and in advance to those who do.. any information is appreciated!

 

[LisaGreene]

CF is kind of funny. Different people have different symptoms. That's what sort of makes it so hard. I know of one person that was diagnosed because of severe skin problems. Turns out that CF causes vitamin deficiencies so it caused the skin issues. Smart doc that picked that one up...

So, your symptoms of lung, sinus, ear infections are within the realm of possibility. My children, both with CF, even at ages 10 & 12 don't cough that much unless they are sick.

So- the waiting is the hardest part. Hang in there. The CF Foundation has a good webpage that might help you at the point that you are now at. Here's the link: www.cff.org/AboutCF/Testing/NewbornScreening/

We are rooting for you. As hard as this is, knowing what is going on will be a relief. And you can then care for your baby knowing that you are giving him your best.

Hugs and Hope, Lisa

- I thought I'd add to this to address your new post about weight gain- it IS hard to know if your first born child has normal stool. I really struggled with that with my son- the docs kept saying: "Is it normal?" And I was like: "What does normal look like?!" Ask your friends if you can watch when they change their child's diaper. Of course it probably should be a really good friend that understands the situation or you may get really weird looks and a phone call from DSHS. ;-)

Low weight and acid reflux are also common issues associated with CF. You have some of the "signs" but don't leap to conclusions yet. There is also the possibility of having certain CF genetic mutations that cause some of the symptoms but not classified as having "true" CF. It's very complicated and research is still going on with this. Here's a quote:

"Mutations in the CFTR gene can cause CF, but not all CFTR mutations are disease-causing. The term CFTR-related metabolic syndrome (CRMS) is proposed to describe infants identified by hypertrypsinogenemia on NBS who have sweat chloride values <60 mmol/L and up to 2 CFTR mutations, at least 1 of which is not clearly categorized as a "CF-causing mutation," thus they do not meet CF Foundation guidelines for the diagnosis of CF."

Get the sweat test as soon as you can. The quicker you know, the better you'll be able to take proper care of your baby. If he does have CF, he needs to get onto pancreatic enzymes as soon as possible to help with the weight gain and reflux.


Take good care.

 

[LisaGreene]

CF is kind of funny. Different people have different symptoms. That's what sort of makes it so hard. I know of one person that was diagnosed because of severe skin problems. Turns out that CF causes vitamin deficiencies so it caused the skin issues. Smart doc that picked that one up...

So, your symptoms of lung, sinus, ear infections are within the realm of possibility. My children, both with CF, even at ages 10 & 12 don't cough that much unless they are sick.

So- the waiting is the hardest part. Hang in there. The CF Foundation has a good webpage that might help you at the point that you are now at. Here's the link: www.cff.org/AboutCF/Testing/NewbornScreening/

We are rooting for you. As hard as this is, knowing what is going on will be a relief. And you can then care for your baby knowing that you are giving him your best.

Hugs and Hope, Lisa

- I thought I'd add to this to address your new post about weight gain- it IS hard to know if your first born child has normal stool. I really struggled with that with my son- the docs kept saying: "Is it normal?" And I was like: "What does normal look like?!" Ask your friends if you can watch when they change their child's diaper. Of course it probably should be a really good friend that understands the situation or you may get really weird looks and a phone call from DSHS. ;-)

Low weight and acid reflux are also common issues associated with CF. You have some of the "signs" but don't leap to conclusions yet. There is also the possibility of having certain CF genetic mutations that cause some of the symptoms but not classified as having "true" CF. It's very complicated and research is still going on with this. Here's a quote:

"Mutations in the CFTR gene can cause CF, but not all CFTR mutations are disease-causing. The term CFTR-related metabolic syndrome (CRMS) is proposed to describe infants identified by hypertrypsinogenemia on NBS who have sweat chloride values <60 mmol/L and up to 2 CFTR mutations, at least 1 of which is not clearly categorized as a "CF-causing mutation," thus they do not meet CF Foundation guidelines for the diagnosis of CF."

Get the sweat test as soon as you can. The quicker you know, the better you'll be able to take proper care of your baby. If he does have CF, he needs to get onto pancreatic enzymes as soon as possible to help with the weight gain and reflux.


Take good care.