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Went in today
- Thread starter amyr
- Start date
My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.
My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.
My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.
My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.
My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amyr</b></i>
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amyr</b></i>
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amyr</b></i>
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
I just don't want to believe any of this.</end quote></div>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amyr</b></i>
I just don't want to believe any of this.</end quote>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
I just don't want to believe any of this.</end quote>
Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amyr</b></i>
<br />
<br /> I just don't want to believe any of this.</end quote>
<br />
<br />Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
<br />
<br />Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
<br />
<br />.
<br />
<br /> I just don't want to believe any of this.</end quote>
<br />
<br />Oh Amy, I'm so sorry you are hearing all of this at the same time, that's a lot to take in. You haven't even had much time to process the diagnosis of your kids. I understand how you feel, sometimes reality is a slap in the face.
<br />
<br />Take it slow, try to sort it out in little bits so it doesn't seem so overwhelming. Remember though, its not your fault that your daughter is having problems, you are doing your best. Hang in there! Good thing you have a computer!) <img src="i/expressions/heart.gif" border="0">
<br />
<br />.
I'm so sorry Amy...I wish there was something I could do.
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
I'm so sorry Amy...I wish there was something I could do.
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
I'm so sorry Amy...I wish there was something I could do.
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
I'm so sorry Amy...I wish there was something I could do.
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
*Hugs*
<img src="i/expressions/rose.gif" border="0">
I'm so sorry Amy...I wish there was something I could do.
<br />How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
<br />
<br />*Hugs*
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />How old is your daughter and where are you staying? Maybe we could get some people to send her cards? I know that my daughter loves to get mail! <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />I'll be thinking of you and your family Amy. Like Jane said; reality is a slap in the face sometimes. If you need help remembering anything; keep a note book with you. (That is what I do) That way when you think of a question you can write it down. The best thing do to is to arm yourself with knowledge and ask a lot of questions.
<br />
<br />*Hugs*
<br />
<br /><img src="i/expressions/rose.gif" border="0">