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HELP?
- Thread starter anonymous
- Start date
Emily65Roses
New member
You want to know if living on a lake is going to harm him? I would say absolutely not. It'd actually be good for him, because it allows for easy access to somewhere to swim. And that's really good physio therapy.
Emily65Roses
New member
You want to know if living on a lake is going to harm him? I would say absolutely not. It'd actually be good for him, because it allows for easy access to somewhere to swim. And that's really good physio therapy.
Rutgersnyy
New member
You are going to have to give him pills before he eats anything w/ fat in it, the more fat the more pills he has to take. He will also have to do chest therapy, where you pat his chest in 4 spots, twice a day to get up any mucus. They have a vest that insurance will pay for, you can do that instead. There is medications, and it all depends on how severe the CF is.
You might not have to do the pill thing, if he was able to get away w/ no medication for food so far, then you may not have to do that.
You might not have to do the pill thing, if he was able to get away w/ no medication for food so far, then you may not have to do that.
Rutgersnyy
New member
You are going to have to give him pills before he eats anything w/ fat in it, the more fat the more pills he has to take. He will also have to do chest therapy, where you pat his chest in 4 spots, twice a day to get up any mucus. They have a vest that insurance will pay for, you can do that instead. There is medications, and it all depends on how severe the CF is.
You might not have to do the pill thing, if he was able to get away w/ no medication for food so far, then you may not have to do that.
You might not have to do the pill thing, if he was able to get away w/ no medication for food so far, then you may not have to do that.
Emily65Roses
New member
A lot of CFers get told they have asthma or this that and the other thing for good portions of their lives. There are several people on this site that didn't get diagnosed until they were adults. It is a major thing, and definitely important to know, but quite frankly... doctors that don't specialize in it, generally wouldn't know CF if it smacked them in the face. It seems surprising to us, but there's a lot of ignorance out there about it.
As for what to expect... you can't, really. Meds and therapies are changing all the time, life expectancies too. Plus every CF case is so incredibly different. Some people die before they hit 20, others on here are in their 40s and 50s. If you're curious about the things that could *possibly* happen, I say browse the site. There's a whole lot of stuff we could address, and it'd take forever. Besides, if you browse, you can look at stuff you specifically want to know, things that are particularly important to you instead of *everything* all at once.
If you have any more questions more on the specific side (as opposed to "what should I expect?"), those will be more easily answered right in this thread. Otherwise, definitely look around. There's all sorts of threads about all sorts of aspects of CF.
As for what to expect... you can't, really. Meds and therapies are changing all the time, life expectancies too. Plus every CF case is so incredibly different. Some people die before they hit 20, others on here are in their 40s and 50s. If you're curious about the things that could *possibly* happen, I say browse the site. There's a whole lot of stuff we could address, and it'd take forever. Besides, if you browse, you can look at stuff you specifically want to know, things that are particularly important to you instead of *everything* all at once.
If you have any more questions more on the specific side (as opposed to "what should I expect?"), those will be more easily answered right in this thread. Otherwise, definitely look around. There's all sorts of threads about all sorts of aspects of CF.
Emily65Roses
New member
A lot of CFers get told they have asthma or this that and the other thing for good portions of their lives. There are several people on this site that didn't get diagnosed until they were adults. It is a major thing, and definitely important to know, but quite frankly... doctors that don't specialize in it, generally wouldn't know CF if it smacked them in the face. It seems surprising to us, but there's a lot of ignorance out there about it.
As for what to expect... you can't, really. Meds and therapies are changing all the time, life expectancies too. Plus every CF case is so incredibly different. Some people die before they hit 20, others on here are in their 40s and 50s. If you're curious about the things that could *possibly* happen, I say browse the site. There's a whole lot of stuff we could address, and it'd take forever. Besides, if you browse, you can look at stuff you specifically want to know, things that are particularly important to you instead of *everything* all at once.
If you have any more questions more on the specific side (as opposed to "what should I expect?"), those will be more easily answered right in this thread. Otherwise, definitely look around. There's all sorts of threads about all sorts of aspects of CF.
As for what to expect... you can't, really. Meds and therapies are changing all the time, life expectancies too. Plus every CF case is so incredibly different. Some people die before they hit 20, others on here are in their 40s and 50s. If you're curious about the things that could *possibly* happen, I say browse the site. There's a whole lot of stuff we could address, and it'd take forever. Besides, if you browse, you can look at stuff you specifically want to know, things that are particularly important to you instead of *everything* all at once.
If you have any more questions more on the specific side (as opposed to "what should I expect?"), those will be more easily answered right in this thread. Otherwise, definitely look around. There's all sorts of threads about all sorts of aspects of CF.
Rutgersnyy
New member
Yes it all depends on how they do. I really don't know much, there are many people who are better fit to answer any questions you have. He could have just very mild CF, did they tell you?
Rutgersnyy
New member
Yes it all depends on how they do. I really don't know much, there are many people who are better fit to answer any questions you have. He could have just very mild CF, did they tell you?
Rutgersnyy
New member
Emily, since people are 40 and 50 on this board and they did not have as good medication most of their lives as there are right now, could we expect people to live even longer than that in 30 years or so?
I was lucky with being diagnosed at birth becuase I was meconium illeus (sp?). When were you diagnosed?
I was lucky with being diagnosed at birth becuase I was meconium illeus (sp?). When were you diagnosed?
Rutgersnyy
New member
Emily, since people are 40 and 50 on this board and they did not have as good medication most of their lives as there are right now, could we expect people to live even longer than that in 30 years or so?
I was lucky with being diagnosed at birth becuase I was meconium illeus (sp?). When were you diagnosed?
I was lucky with being diagnosed at birth becuase I was meconium illeus (sp?). When were you diagnosed?
Emily65Roses
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Rutgersnyy</b></i><br>He could have just very mild CF, did they tell you?<hr></blockquote>
I just want to address this quickly. Don't necessarily take any labels like "mild" "moderate" or "severe" to mean that that's the way your son will always be. There are people who have generally mild cases, and generally severe ones. BUT... CF by nature is a progressive disease. So for most of us... we start out mild, then it moves to moderate, and somewhere along the line it gets to severe. I don't particularly like when doctors throw those labels around to new CFer parents, because it often gives a lot of false hope. Hope is good, false hope isn't. That's not to say it's impossible your son has a *true* mild case, but in most of us, it changes as we get older, because that's the nature of CF.
I just want to address this quickly. Don't necessarily take any labels like "mild" "moderate" or "severe" to mean that that's the way your son will always be. There are people who have generally mild cases, and generally severe ones. BUT... CF by nature is a progressive disease. So for most of us... we start out mild, then it moves to moderate, and somewhere along the line it gets to severe. I don't particularly like when doctors throw those labels around to new CFer parents, because it often gives a lot of false hope. Hope is good, false hope isn't. That's not to say it's impossible your son has a *true* mild case, but in most of us, it changes as we get older, because that's the nature of CF.
Emily65Roses
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Rutgersnyy</b></i><br>He could have just very mild CF, did they tell you?<hr></blockquote>
I just want to address this quickly. Don't necessarily take any labels like "mild" "moderate" or "severe" to mean that that's the way your son will always be. There are people who have generally mild cases, and generally severe ones. BUT... CF by nature is a progressive disease. So for most of us... we start out mild, then it moves to moderate, and somewhere along the line it gets to severe. I don't particularly like when doctors throw those labels around to new CFer parents, because it often gives a lot of false hope. Hope is good, false hope isn't. That's not to say it's impossible your son has a *true* mild case, but in most of us, it changes as we get older, because that's the nature of CF.
I just want to address this quickly. Don't necessarily take any labels like "mild" "moderate" or "severe" to mean that that's the way your son will always be. There are people who have generally mild cases, and generally severe ones. BUT... CF by nature is a progressive disease. So for most of us... we start out mild, then it moves to moderate, and somewhere along the line it gets to severe. I don't particularly like when doctors throw those labels around to new CFer parents, because it often gives a lot of false hope. Hope is good, false hope isn't. That's not to say it's impossible your son has a *true* mild case, but in most of us, it changes as we get older, because that's the nature of CF.