DS's symptoms have mainly been digestive; however, his CF doctor in the city has indicated that CFers are born with normal lungs, but because it's a progressive disease, the lung will become affected at some point, so it's important to do CPT 2-4 times a day to keep the lungs healthy. Our local CF clinic is more reactive than proactive, recently at one of our walk meetings a mom of a toddler wcf indicated that they only just started doing CPT and that was because her child was hospitalized for pneumonia.
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Treatment approach for R117h
- Thread starter SaraBlue
- Start date
I have always done everything the cf clinic suggests. Visits every 3 months w/sputum culture. The annual visit w/chest xray and bloodwork. Vest 30-60 min/day. Trying to add more calories. More handwashing and avoiding sick people.
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
I have always done everything the cf clinic suggests. Visits every 3 months w/sputum culture. The annual visit w/chest xray and bloodwork. Vest 30-60 min/day. Trying to add more calories. More handwashing and avoiding sick people.
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
I have always done everything the cf clinic suggests. Visits every 3 months w/sputum culture. The annual visit w/chest xray and bloodwork. Vest 30-60 min/day. Trying to add more calories. More handwashing and avoiding sick people.
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
About the staph, I was told that some studies have suggested that treating it w/ab may encourage the growth of PA. So I am very torn on this issue.
Thanks for the input. I'm happy with our clinic but I am thinking about getting a second opinion.
Sara
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>janddburke</b></i>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
Not sure about treatment by mutation, but my daugher also has the R117H (not sure about the extention)
from what I read this mutation is only associated with pancreatic sufficiency but no guarantees on pulmonary manifestations.
best course of action is to find a doctor whom you like and respect and follow his advice.
REALLY REALLY follow his advice. if the team says PT twice or three times a day and things are going well, don't stop.
perscribed antibiotics but child doing well, don't stop.
could not have put this any better. our son is the same, he has aantibiotic he takes everyday. We treat our Craig as he has CF, we are very proactive, as is his doctor, yes the mutation is classed as mild but we dont get complacent on this.
appointments every 3 months, keep them.
keep your head up and give your son a big kiss.</end quote></div>
kayleesgrandma
New member
Don't worry Craig, at your "age' you are expected to be a little slower at things--heheheh <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-tongue.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
kayleesgrandma
New member
Don't worry Craig, at your "age' you are expected to be a little slower at things--heheheh <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-tongue.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
kayleesgrandma
New member
Don't worry Craig, at your "age' you are expected to be a little slower at things--heheheh <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-tongue.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
janddburke
New member
nothing wrong with a second opinion.
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!
janddburke
New member
nothing wrong with a second opinion.
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!
janddburke
New member
nothing wrong with a second opinion.
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!
worst case - you get a new doctor
best case - you realize your current doctor isn't so bad.
have your list of questions ready and have at 'em!