Hi Laura, my name is Sally. I haven't read the replies to your post, so forgive me if I'm repeating something already said.
First, let me say that I am a 40 yr old female, diagnosed at birth (meconium illeus)....and I'm doing fairly well all things considered. I just recently got married.
You asked about a "standard of care" Yes, there is. If you go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindAChapter/
">http://www.cff.org/aboutCFFoun...cations/FindAChapter/
</a>
you can find your local CF Care Center - GO THERE! They know everything. You will see a CF Specialists, a nutritionist, a social worker (that is there to help guide you towards financial assistance and any other issues as such), and a pharmacologist. Plus, a nurse that helps coordinate Tanner's care. They will also admit Tanner to a CF Foundation approved Hospital (for treatment, if needed).
Trust me, don't rely on your HMO to know what to do in treatment.
I mostly had intestional trouble as a kid - I was put on emzymes (pancrease) right away. It was mixed in with my food until I was old enough to take pills. I don't know the strength though.
As far as preventitived for the lungs:
Inhaled (nebulized) Albuterol is a good start in keeping inflammation down. Inhaled Pulmozyme is supposed to help "digest" the mucus so that it's easier to cough up, however, I found the new treatment of inhaled "hypertonic saline" to cause me to be 1000% more productive. BUT, I still use the pulmozyme in addition. (I haven't talked to the dr's, but I'm sure the pulmozyme still does something to help, so I haven't stopped that.)
As far as some being sicker than others - I think (though not confirmed) that it has to do with the specific mutation of the CF gene. I wish I could tell you what mine is, but I don't know. Though I will ask next time, so I can let you know.
I hope this is a start.
Love and Blessings,
Sally, (40 yrs old - ekk!...lol)
First, let me say that I am a 40 yr old female, diagnosed at birth (meconium illeus)....and I'm doing fairly well all things considered. I just recently got married.
You asked about a "standard of care" Yes, there is. If you go to:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindAChapter/
">http://www.cff.org/aboutCFFoun...cations/FindAChapter/
</a>
you can find your local CF Care Center - GO THERE! They know everything. You will see a CF Specialists, a nutritionist, a social worker (that is there to help guide you towards financial assistance and any other issues as such), and a pharmacologist. Plus, a nurse that helps coordinate Tanner's care. They will also admit Tanner to a CF Foundation approved Hospital (for treatment, if needed).
Trust me, don't rely on your HMO to know what to do in treatment.
I mostly had intestional trouble as a kid - I was put on emzymes (pancrease) right away. It was mixed in with my food until I was old enough to take pills. I don't know the strength though.
As far as preventitived for the lungs:
Inhaled (nebulized) Albuterol is a good start in keeping inflammation down. Inhaled Pulmozyme is supposed to help "digest" the mucus so that it's easier to cough up, however, I found the new treatment of inhaled "hypertonic saline" to cause me to be 1000% more productive. BUT, I still use the pulmozyme in addition. (I haven't talked to the dr's, but I'm sure the pulmozyme still does something to help, so I haven't stopped that.)
As far as some being sicker than others - I think (though not confirmed) that it has to do with the specific mutation of the CF gene. I wish I could tell you what mine is, but I don't know. Though I will ask next time, so I can let you know.
I hope this is a start.
Love and Blessings,
Sally, (40 yrs old - ekk!...lol)