LisaGreene
New member
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...
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<br />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.
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<br />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/
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<br />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.
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<br />Hugs and Hope, Lisa
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<br />- 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. ;-)
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<br />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:
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<br />"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."
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<br />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.
<br />
<br />
<br />Take good care.
<br />
<br />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.
<br />
<br />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/
<br />
<br />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.
<br />
<br />Hugs and Hope, Lisa
<br />
<br />- 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. ;-)
<br />
<br />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:
<br />
<br />"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."
<br />
<br />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.
<br />
<br />
<br />Take good care.