Hang in there! CF can affect patients in many different ways, depending on the mutations. Some mutation combos are considered more severe than others and may give the CF patient more issues. Once your doctor is able to determine the mutation, that should *help* give some idea of what to expect and the progression.<br>
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Confused! Son newly diagnosed
- Thread starter mneds
- Start date
Hang in there! CF can affect patients in many different ways, depending on the mutations. Some mutation combos are considered more severe than others and may give the CF patient more issues. Once your doctor is able to determine the mutation, that should *help* give some idea of what to expect and the progression.<br>
Hang in there! CF can affect patients in many different ways, depending on the mutations. Some mutation combos are considered more severe than others and may give the CF patient more issues. Once your doctor is able to determine the mutation, that should *help* give some idea of what to expect and the progression.<br>
Andrea2XCFers
New member
my oldest (20 yrs old) HATES the hypertonic saline and so the docs do not make him do it...if it burns and is causing trouble, your child needs to not do it...tell the doctors! If it comes to a treatment's benefits outweighing the side effects, the docs will help you come to a choice. Sounds like his lungs are not bad, so why irritate them? Whether he has CF, or not, you need to educate yourself, ask questions, take notes, challenge the doctors, rely on the nurses, and, if it's CF, you need to lead your child just like you do with everything! CF treatments need to be just as essential and regular as brushing teeth or going to the bathroom. If it's CF you will need to call on your personal inner strength (trust me, it's there!!) and learn to LEARN everything!! Don't be faint-hearted!
Andrea2XCFers
New member
my oldest (20 yrs old) HATES the hypertonic saline and so the docs do not make him do it...if it burns and is causing trouble, your child needs to not do it...tell the doctors! If it comes to a treatment's benefits outweighing the side effects, the docs will help you come to a choice. Sounds like his lungs are not bad, so why irritate them? Whether he has CF, or not, you need to educate yourself, ask questions, take notes, challenge the doctors, rely on the nurses, and, if it's CF, you need to lead your child just like you do with everything! CF treatments need to be just as essential and regular as brushing teeth or going to the bathroom. If it's CF you will need to call on your personal inner strength (trust me, it's there!!) and learn to LEARN everything!! Don't be faint-hearted!
Andrea2XCFers
New member
my oldest (20 yrs old) HATES the hypertonic saline and so the docs do not make him do it...if it burns and is causing trouble, your child needs to not do it...tell the doctors! If it comes to a treatment's benefits outweighing the side effects, the docs will help you come to a choice. Sounds like his lungs are not bad, so why irritate them? Whether he has CF, or not, you need to educate yourself, ask questions, take notes, challenge the doctors, rely on the nurses, and, if it's CF, you need to lead your child just like you do with everything! CF treatments need to be just as essential and regular as brushing teeth or going to the bathroom. If it's CF you will need to call on your personal inner strength (trust me, it's there!!) and learn to LEARN everything!! Don't be faint-hearted!