HELP...I don't know what else to do...

kayleesgrandma

New member
Suz, please know that there are a bunch of us here who are keeping track of you and the kids situation. We are thinking of you, and want you to know that YOU AER NOT ALONE!! We are here for you...<img src="i/expressions/heart.gif" border="0">
 

suziecoffeebean

New member
OK yall....I need to know before I flip out. Is there such thing as an atypical mild case of CF??? If so, what the heck does that mean???? I had a chance to talk to the kids but I do not have time to type it all right now...I will get back on later. Just wanted to know if anyone could answer this question for me...
 

suziecoffeebean

New member
OK yall....I need to know before I flip out. Is there such thing as an atypical mild case of CF??? If so, what the heck does that mean???? I had a chance to talk to the kids but I do not have time to type it all right now...I will get back on later. Just wanted to know if anyone could answer this question for me...
 

suziecoffeebean

New member
OK yall....I need to know before I flip out. Is there such thing as an atypical mild case of CF??? If so, what the heck does that mean???? I had a chance to talk to the kids but I do not have time to type it all right now...I will get back on later. Just wanted to know if anyone could answer this question for me...
 

suziecoffeebean

New member
OK yall....I need to know before I flip out. Is there such thing as an atypical mild case of CF??? If so, what the heck does that mean???? I had a chance to talk to the kids but I do not have time to type it all right now...I will get back on later. Just wanted to know if anyone could answer this question for me...
 

suziecoffeebean

New member
OK yall....I need to know before I flip out. Is there such thing as an atypical mild case of CF??? If so, what the heck does that mean???? I had a chance to talk to the kids but I do not have time to type it all right now...I will get back on later. Just wanted to know if anyone could answer this question for me...
 

Ratatosk

Administrator
Staff member
Are they going to an accreditted CF Clinic? CF is a progressive disease that affects people differently. Are they referring to their symptoms being mild so far? There was just a brief discussion on "mild" cf under the Delta 508 topic yesterday.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=23159&enterthread=y">http://forums.cysticfibrosis.c...id=23159&enterthread=y</a>
 

Ratatosk

Administrator
Staff member
Are they going to an accreditted CF Clinic? CF is a progressive disease that affects people differently. Are they referring to their symptoms being mild so far? There was just a brief discussion on "mild" cf under the Delta 508 topic yesterday.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=23159&enterthread=y">http://forums.cysticfibrosis.c...id=23159&enterthread=y</a>
 

Ratatosk

Administrator
Staff member
Are they going to an accreditted CF Clinic? CF is a progressive disease that affects people differently. Are they referring to their symptoms being mild so far? There was just a brief discussion on "mild" cf under the Delta 508 topic yesterday.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=23159&enterthread=y">http://forums.cysticfibrosis.c...id=23159&enterthread=y</a>
 

Ratatosk

Administrator
Staff member
Are they going to an accreditted CF Clinic? CF is a progressive disease that affects people differently. Are they referring to their symptoms being mild so far? There was just a brief discussion on "mild" cf under the Delta 508 topic yesterday.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=23159&enterthread=y">http://forums.cysticfibrosis.c...id=23159&enterthread=y</a>
 

Ratatosk

Administrator
Staff member
Are they going to an accreditted CF Clinic? CF is a progressive disease that affects people differently. Are they referring to their symptoms being mild so far? There was just a brief discussion on "mild" cf under the Delta 508 topic yesterday.

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=23159&enterthread=y">http://forums.cysticfibrosis.c...id=23159&enterthread=y</a>
 

JORDYSMOM

New member
Yes there are a-typical cases, some people refer to it as "mild". I don't know how anyone can call a life threatening disease mild, but I guess they mean the symptoms are mild. My son's symptoms are mild at this time. He has rare mutations and does not have as many digestive problems as some people. His is mostly allergy and lung related. He has asthmatic tendencies also.

My son wasn't diagnosed until he was 15 because his symptoms were fairly mild. They did start to worsen and be more pronounced as he aged though. That is because CF is a progressive disease. Since Jordan's dx he has not had as many trips to the ER for breathing problems. That is because he is now getting the proper care. Before, we were reactive, not proactive, because we just didn't know any better.

Your siblings probably do have mild symptoms, but that doesn't mean they will always stay that way. I am certainly not an expert on CF, but I have been educating myself as best I can since my son's dx. Anyone I've spoken to about this disease has told me it's imperative to be proactive. This disease can sneak up on you and bite you in the butt so quickly. Jordan doesn't get sick often, but when he does, he gets really sick really fast! He looses weight so easily and it takes months for him to put it back on.

I know you are concerned about the kids. I would think that the clinic will request that they come in every three months. That seems to be the norm. I'm just glad they were seen by someone. Your perserverance has paid off.

Keep us posted.

Stacey
 

JORDYSMOM

New member
Yes there are a-typical cases, some people refer to it as "mild". I don't know how anyone can call a life threatening disease mild, but I guess they mean the symptoms are mild. My son's symptoms are mild at this time. He has rare mutations and does not have as many digestive problems as some people. His is mostly allergy and lung related. He has asthmatic tendencies also.

My son wasn't diagnosed until he was 15 because his symptoms were fairly mild. They did start to worsen and be more pronounced as he aged though. That is because CF is a progressive disease. Since Jordan's dx he has not had as many trips to the ER for breathing problems. That is because he is now getting the proper care. Before, we were reactive, not proactive, because we just didn't know any better.

Your siblings probably do have mild symptoms, but that doesn't mean they will always stay that way. I am certainly not an expert on CF, but I have been educating myself as best I can since my son's dx. Anyone I've spoken to about this disease has told me it's imperative to be proactive. This disease can sneak up on you and bite you in the butt so quickly. Jordan doesn't get sick often, but when he does, he gets really sick really fast! He looses weight so easily and it takes months for him to put it back on.

I know you are concerned about the kids. I would think that the clinic will request that they come in every three months. That seems to be the norm. I'm just glad they were seen by someone. Your perserverance has paid off.

Keep us posted.

Stacey
 

JORDYSMOM

New member
Yes there are a-typical cases, some people refer to it as "mild". I don't know how anyone can call a life threatening disease mild, but I guess they mean the symptoms are mild. My son's symptoms are mild at this time. He has rare mutations and does not have as many digestive problems as some people. His is mostly allergy and lung related. He has asthmatic tendencies also.

My son wasn't diagnosed until he was 15 because his symptoms were fairly mild. They did start to worsen and be more pronounced as he aged though. That is because CF is a progressive disease. Since Jordan's dx he has not had as many trips to the ER for breathing problems. That is because he is now getting the proper care. Before, we were reactive, not proactive, because we just didn't know any better.

Your siblings probably do have mild symptoms, but that doesn't mean they will always stay that way. I am certainly not an expert on CF, but I have been educating myself as best I can since my son's dx. Anyone I've spoken to about this disease has told me it's imperative to be proactive. This disease can sneak up on you and bite you in the butt so quickly. Jordan doesn't get sick often, but when he does, he gets really sick really fast! He looses weight so easily and it takes months for him to put it back on.

I know you are concerned about the kids. I would think that the clinic will request that they come in every three months. That seems to be the norm. I'm just glad they were seen by someone. Your perserverance has paid off.

Keep us posted.

Stacey
 

JORDYSMOM

New member
Yes there are a-typical cases, some people refer to it as "mild". I don't know how anyone can call a life threatening disease mild, but I guess they mean the symptoms are mild. My son's symptoms are mild at this time. He has rare mutations and does not have as many digestive problems as some people. His is mostly allergy and lung related. He has asthmatic tendencies also.

My son wasn't diagnosed until he was 15 because his symptoms were fairly mild. They did start to worsen and be more pronounced as he aged though. That is because CF is a progressive disease. Since Jordan's dx he has not had as many trips to the ER for breathing problems. That is because he is now getting the proper care. Before, we were reactive, not proactive, because we just didn't know any better.

Your siblings probably do have mild symptoms, but that doesn't mean they will always stay that way. I am certainly not an expert on CF, but I have been educating myself as best I can since my son's dx. Anyone I've spoken to about this disease has told me it's imperative to be proactive. This disease can sneak up on you and bite you in the butt so quickly. Jordan doesn't get sick often, but when he does, he gets really sick really fast! He looses weight so easily and it takes months for him to put it back on.

I know you are concerned about the kids. I would think that the clinic will request that they come in every three months. That seems to be the norm. I'm just glad they were seen by someone. Your perserverance has paid off.

Keep us posted.

Stacey
 

JORDYSMOM

New member
Yes there are a-typical cases, some people refer to it as "mild". I don't know how anyone can call a life threatening disease mild, but I guess they mean the symptoms are mild. My son's symptoms are mild at this time. He has rare mutations and does not have as many digestive problems as some people. His is mostly allergy and lung related. He has asthmatic tendencies also.

My son wasn't diagnosed until he was 15 because his symptoms were fairly mild. They did start to worsen and be more pronounced as he aged though. That is because CF is a progressive disease. Since Jordan's dx he has not had as many trips to the ER for breathing problems. That is because he is now getting the proper care. Before, we were reactive, not proactive, because we just didn't know any better.

Your siblings probably do have mild symptoms, but that doesn't mean they will always stay that way. I am certainly not an expert on CF, but I have been educating myself as best I can since my son's dx. Anyone I've spoken to about this disease has told me it's imperative to be proactive. This disease can sneak up on you and bite you in the butt so quickly. Jordan doesn't get sick often, but when he does, he gets really sick really fast! He looses weight so easily and it takes months for him to put it back on.

I know you are concerned about the kids. I would think that the clinic will request that they come in every three months. That seems to be the norm. I'm just glad they were seen by someone. Your perserverance has paid off.

Keep us posted.

Stacey
 

suziecoffeebean

New member
So I have one more question before I type this all later. I have to be at something all night tonight til about 9 after work. Apparently they are being seen at the CF care center at UK in lexington. I am pretty sure it is accredited. The doctor there told the kids that he has a lot of patients in their 70's with CF that are in better shape than he is. I have never even heard of people living into their 70's with this disease. How true is this??? Will read that link later thanks...any info would be helpful. I been trying to read as much as I can about it everyday and it seems to only be the tip of the iceberg...
 

suziecoffeebean

New member
So I have one more question before I type this all later. I have to be at something all night tonight til about 9 after work. Apparently they are being seen at the CF care center at UK in lexington. I am pretty sure it is accredited. The doctor there told the kids that he has a lot of patients in their 70's with CF that are in better shape than he is. I have never even heard of people living into their 70's with this disease. How true is this??? Will read that link later thanks...any info would be helpful. I been trying to read as much as I can about it everyday and it seems to only be the tip of the iceberg...
 

suziecoffeebean

New member
So I have one more question before I type this all later. I have to be at something all night tonight til about 9 after work. Apparently they are being seen at the CF care center at UK in lexington. I am pretty sure it is accredited. The doctor there told the kids that he has a lot of patients in their 70's with CF that are in better shape than he is. I have never even heard of people living into their 70's with this disease. How true is this??? Will read that link later thanks...any info would be helpful. I been trying to read as much as I can about it everyday and it seems to only be the tip of the iceberg...
 

suziecoffeebean

New member
So I have one more question before I type this all later. I have to be at something all night tonight til about 9 after work. Apparently they are being seen at the CF care center at UK in lexington. I am pretty sure it is accredited. The doctor there told the kids that he has a lot of patients in their 70's with CF that are in better shape than he is. I have never even heard of people living into their 70's with this disease. How true is this??? Will read that link later thanks...any info would be helpful. I been trying to read as much as I can about it everyday and it seems to only be the tip of the iceberg...
 
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