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DDF508
- Thread starter NancyLKF
- Start date
shimmereestar
New member
Hi there,
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
shimmereestar
New member
Hi there,
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
shimmereestar
New member
Hi there,
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
shimmereestar
New member
Hi there,
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
shimmereestar
New member
Hi there,
<br />
<br />I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
<br />
<br />I was right were you were this time last year. It was a devasting blow to us and I was in a dark place for months. My DD was actually diagnosed from failure to thrive and pneumonia when she was about 2 1/2 months. We actually got her diagnosis on Jan. 25th so we are right at one year after diagnosis. Our story is a little different because we did not know she had CF right after birth, she did get sick and we were in out of the hospital for months trying to get her back healthy again. The good that came out of all this is we now have her on preventative maintenace and she has been doing fantastically since early summer. It also made me a lot stronger person. She acts just like any other 13 month old and enzymes and treatments do become just a routine. DDF508 is the most common combination and affects the lungs and the digestive system. The good news is there is lots of research and drugs coming through the pipeline. I would go to CFF.org and get information from there. This site and CFF.org are really the CF sites I stick to when trying to find info. Trust me, I did my share of searching and googling and it scared the c**p out of me. It has been a long road and I still have my dark days, but we wouldn't trade her... CF and all for anything. If you need anything, please come talk to us here and feel free to pm me anytime.
crickit715
New member
go to cff.org and click on either clinical trials or drug development pipeline.....they are all listed on there with the new one! God bless
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
crickit715
New member
go to cff.org and click on either clinical trials or drug development pipeline.....they are all listed on there with the new one! God bless
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
crickit715
New member
go to cff.org and click on either clinical trials or drug development pipeline.....they are all listed on there with the new one! God bless
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote></div>
crickit715
New member
go to cff.org and click on either clinical trials or drug development pipeline.....they are all listed on there with the new one! God bless
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote>
crickit715
New member
go to cff.org and click on either clinical trials or drug development pipeline.....they are all listed on there with the new one! God bless
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
<br />
<br />can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>nuttzzy</b></i>
<br />
<br />can anyone post me the link where its talking about the meds in 2nd stage of trial i can see to find it...</end quote>