I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had lung infections over the holidays. My youngest got rid of it with one round of bactrim but my daughter took two rounds. Her lung function actually dropped while on it. She seemed to improve and then again today "out of the blue" woke up all "junky" w/a "painful"cough. That's how she goes down. I put he to bed she sounds fine and wakes up with a cough she sounds like she has had for weeks. I'm so discouraged. I am so overwhelmed with trying to get all of their tx's.in. Sometimes I feel that it's okay to go without the vest or the pulmozyme when they sound good but then here we are again sick..I am having such a hard time grasping all of this. Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting. Guess my question is do others out there experience going down hill so quickly like my daughter does?
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Sick Again
- Thread starter amyr
- Start date
I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had lung infections over the holidays. My youngest got rid of it with one round of bactrim but my daughter took two rounds. Her lung function actually dropped while on it. She seemed to improve and then again today "out of the blue" woke up all "junky" w/a "painful"cough. That's how she goes down. I put he to bed she sounds fine and wakes up with a cough she sounds like she has had for weeks. I'm so discouraged. I am so overwhelmed with trying to get all of their tx's.in. Sometimes I feel that it's okay to go without the vest or the pulmozyme when they sound good but then here we are again sick..I am having such a hard time grasping all of this. Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting. Guess my question is do others out there experience going down hill so quickly like my daughter does?
I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had lung infections over the holidays. My youngest got rid of it with one round of bactrim but my daughter took two rounds. Her lung function actually dropped while on it. She seemed to improve and then again today "out of the blue" woke up all "junky" w/a "painful"cough. That's how she goes down. I put he to bed she sounds fine and wakes up with a cough she sounds like she has had for weeks. I'm so discouraged. I am so overwhelmed with trying to get all of their tx's.in. Sometimes I feel that it's okay to go without the vest or the pulmozyme when they sound good but then here we are again sick..I am having such a hard time grasping all of this. Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting. Guess my question is do others out there experience going down hill so quickly like my daughter does?
I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had lung infections over the holidays. My youngest got rid of it with one round of bactrim but my daughter took two rounds. Her lung function actually dropped while on it. She seemed to improve and then again today "out of the blue" woke up all "junky" w/a "painful"cough. That's how she goes down. I put he to bed she sounds fine and wakes up with a cough she sounds like she has had for weeks. I'm so discouraged. I am so overwhelmed with trying to get all of their tx's.in. Sometimes I feel that it's okay to go without the vest or the pulmozyme when they sound good but then here we are again sick..I am having such a hard time grasping all of this. Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting. Guess my question is do others out there experience going down hill so quickly like my daughter does?
I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had lung infections over the holidays. My youngest got rid of it with one round of bactrim but my daughter took two rounds. Her lung function actually dropped while on it. She seemed to improve and then again today "out of the blue" woke up all "junky" w/a "painful"cough. That's how she goes down. I put he to bed she sounds fine and wakes up with a cough she sounds like she has had for weeks. I'm so discouraged. I am so overwhelmed with trying to get all of their tx's.in. Sometimes I feel that it's okay to go without the vest or the pulmozyme when they sound good but then here we are again sick..I am having such a hard time grasping all of this. Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting. Guess my question is do others out there experience going down hill so quickly like my daughter does?
<div class="FTQUOTE"><begin quote>Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting.</end quote></div>
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
<div class="FTQUOTE"><begin quote>Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting.</end quote></div>
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
<div class="FTQUOTE"><begin quote>Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting.</end quote></div>
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
<div class="FTQUOTE"><begin quote>Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting.</end quote>
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
<div class="FTQUOTE"><begin quote>Trying to get three of them to take all the pills and do all the tx's they are supposed to do some days is nearly impossible. Sorry just venting.</end quote>
<br />I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
<br />
<br />It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
<br />I'm so sorry with all you are going through with the three kids! I can't respond to your main question- I am so sorry about that. But how overwhelmed you are feeling, coping with three kids all at once, my heart just goes out to you. We are still pretty new to dx with one, going through the testing process for my other two- and I cannot imagine coping with what you are right now.
<br />
<br />It is very overwhelming coping with chronic health conditions with multiple kids, keeping 'all your ducks in a row' w/ keeping up with dr appts, medications, dealing with how the kids themselves cope with it all (never mind your own sanity!!), etc... I have been dealing with this for 5yrs, before cf came along, and can relate to your discouragement... that is why your post just touched me so much. Hang in there Amy. <img src="i/expressions/heart.gif" border="0">
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hopesiris
Guest
Hi Amy, sorry to hear it's been rough. If there is a lot of post nasal drip it can cause problems at night. Is her bed near a window (drafts)? Is she allergic to dust or laundry detergents used on the bedding? Is the air too cold or too dry? Have you taken her to and ENT familiar with CF to see if there is anything that can dry up the sinuses a little at night so the crap doesn't travel into the lungs? Just a few thoughts being that I have sinus issues myself. As for skipping treatments, yes there has been research on this and skipping even one increases the odds of getting sick. The mucus has to be moved out of the lungs or it builds up and causes illness.
H
hopesiris
Guest
Hi Amy, sorry to hear it's been rough. If there is a lot of post nasal drip it can cause problems at night. Is her bed near a window (drafts)? Is she allergic to dust or laundry detergents used on the bedding? Is the air too cold or too dry? Have you taken her to and ENT familiar with CF to see if there is anything that can dry up the sinuses a little at night so the crap doesn't travel into the lungs? Just a few thoughts being that I have sinus issues myself. As for skipping treatments, yes there has been research on this and skipping even one increases the odds of getting sick. The mucus has to be moved out of the lungs or it builds up and causes illness.
H
hopesiris
Guest
Hi Amy, sorry to hear it's been rough. If there is a lot of post nasal drip it can cause problems at night. Is her bed near a window (drafts)? Is she allergic to dust or laundry detergents used on the bedding? Is the air too cold or too dry? Have you taken her to and ENT familiar with CF to see if there is anything that can dry up the sinuses a little at night so the crap doesn't travel into the lungs? Just a few thoughts being that I have sinus issues myself. As for skipping treatments, yes there has been research on this and skipping even one increases the odds of getting sick. The mucus has to be moved out of the lungs or it builds up and causes illness.
H
hopesiris
Guest
Hi Amy, sorry to hear it's been rough. If there is a lot of post nasal drip it can cause problems at night. Is her bed near a window (drafts)? Is she allergic to dust or laundry detergents used on the bedding? Is the air too cold or too dry? Have you taken her to and ENT familiar with CF to see if there is anything that can dry up the sinuses a little at night so the crap doesn't travel into the lungs? Just a few thoughts being that I have sinus issues myself. As for skipping treatments, yes there has been research on this and skipping even one increases the odds of getting sick. The mucus has to be moved out of the lungs or it builds up and causes illness.
H
hopesiris
Guest
Hi Amy, sorry to hear it's been rough. If there is a lot of post nasal drip it can cause problems at night. Is her bed near a window (drafts)? Is she allergic to dust or laundry detergents used on the bedding? Is the air too cold or too dry? Have you taken her to and ENT familiar with CF to see if there is anything that can dry up the sinuses a little at night so the crap doesn't travel into the lungs? Just a few thoughts being that I have sinus issues myself. As for skipping treatments, yes there has been research on this and skipping even one increases the odds of getting sick. The mucus has to be moved out of the lungs or it builds up and causes illness.
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