Frustrated!!

[hmw]

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well for her last couple infections. Three days after starting it, her cough got much worse and she started spitting up brown stuff. The cough was so bad she couldn't sleep. I called her dr. back and they added Prednisone... that has made SUCH a difference; she was able to sleep much better last night. I was so glad they rx'ed that; I know the difference it made when I had pneumonia a few yrs ago and couldn't breathe!

Anyway... my frustration is largely due to the fact that she's now lost ALL the weight, in one illness, that she's gained since her dx in November. I could just pull my hair out- this has been her struggle all along (and what led to her dx in the first place- growth failure over the last several yrs due to this pattern of loss when sick.)

This will be the first big test with her enzymes- how fast will she be able to rebound from this? She was 47lbs at her last clinic visit (and weighed that much on our home scale too.) She's now down to 43.5lbs. <img src="i/expressions/brokenheart.gif" border="0"> Before dx, that would take her 6+ months to gain back (by which time another illness would have inevitably set her back again.)

I just hope the enzymes do their job; that her respiratory treatments do their job... that things turn out differently than with all the past illnesses she's had like this over the last several yrs that led to such big setbacks.

 

[hmw]

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well for her last couple infections. Three days after starting it, her cough got much worse and she started spitting up brown stuff. The cough was so bad she couldn't sleep. I called her dr. back and they added Prednisone... that has made SUCH a difference; she was able to sleep much better last night. I was so glad they rx'ed that; I know the difference it made when I had pneumonia a few yrs ago and couldn't breathe!

Anyway... my frustration is largely due to the fact that she's now lost ALL the weight, in one illness, that she's gained since her dx in November. I could just pull my hair out- this has been her struggle all along (and what led to her dx in the first place- growth failure over the last several yrs due to this pattern of loss when sick.)

This will be the first big test with her enzymes- how fast will she be able to rebound from this? She was 47lbs at her last clinic visit (and weighed that much on our home scale too.) She's now down to 43.5lbs. <img src="i/expressions/brokenheart.gif" border="0"> Before dx, that would take her 6+ months to gain back (by which time another illness would have inevitably set her back again.)

I just hope the enzymes do their job; that her respiratory treatments do their job... that things turn out differently than with all the past illnesses she's had like this over the last several yrs that led to such big setbacks.

 

[hmw]

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well for her last couple infections. Three days after starting it, her cough got much worse and she started spitting up brown stuff. The cough was so bad she couldn't sleep. I called her dr. back and they added Prednisone... that has made SUCH a difference; she was able to sleep much better last night. I was so glad they rx'ed that; I know the difference it made when I had pneumonia a few yrs ago and couldn't breathe!

Anyway... my frustration is largely due to the fact that she's now lost ALL the weight, in one illness, that she's gained since her dx in November. I could just pull my hair out- this has been her struggle all along (and what led to her dx in the first place- growth failure over the last several yrs due to this pattern of loss when sick.)

This will be the first big test with her enzymes- how fast will she be able to rebound from this? She was 47lbs at her last clinic visit (and weighed that much on our home scale too.) She's now down to 43.5lbs. <img src="i/expressions/brokenheart.gif" border="0"> Before dx, that would take her 6+ months to gain back (by which time another illness would have inevitably set her back again.)

I just hope the enzymes do their job; that her respiratory treatments do their job... that things turn out differently than with all the past illnesses she's had like this over the last several yrs that led to such big setbacks.

 

[hmw]

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well for her last couple infections. Three days after starting it, her cough got much worse and she started spitting up brown stuff. The cough was so bad she couldn't sleep. I called her dr. back and they added Prednisone... that has made SUCH a difference; she was able to sleep much better last night. I was so glad they rx'ed that; I know the difference it made when I had pneumonia a few yrs ago and couldn't breathe!

Anyway... my frustration is largely due to the fact that she's now lost ALL the weight, in one illness, that she's gained since her dx in November. I could just pull my hair out- this has been her struggle all along (and what led to her dx in the first place- growth failure over the last several yrs due to this pattern of loss when sick.)

This will be the first big test with her enzymes- how fast will she be able to rebound from this? She was 47lbs at her last clinic visit (and weighed that much on our home scale too.) She's now down to 43.5lbs. <img src="i/expressions/brokenheart.gif" border="0"> Before dx, that would take her 6+ months to gain back (by which time another illness would have inevitably set her back again.)

I just hope the enzymes do their job; that her respiratory treatments do their job... that things turn out differently than with all the past illnesses she's had like this over the last several yrs that led to such big setbacks.

 

[hmw]

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well for her last couple infections. Three days after starting it, her cough got much worse and she started spitting up brown stuff. The cough was so bad she couldn't sleep. I called her dr. back and they added Prednisone... that has made SUCH a difference; she was able to sleep much better last night. I was so glad they rx'ed that; I know the difference it made when I had pneumonia a few yrs ago and couldn't breathe!
<br />
<br />Anyway... my frustration is largely due to the fact that she's now lost ALL the weight, in one illness, that she's gained since her dx in November. I could just pull my hair out- this has been her struggle all along (and what led to her dx in the first place- growth failure over the last several yrs due to this pattern of loss when sick.)
<br />
<br />This will be the first big test with her enzymes- how fast will she be able to rebound from this? She was 47lbs at her last clinic visit (and weighed that much on our home scale too.) She's now down to 43.5lbs. <img src="i/expressions/brokenheart.gif" border="0"> Before dx, that would take her 6+ months to gain back (by which time another illness would have inevitably set her back again.)
<br />
<br />I just hope the enzymes do their job; that her respiratory treatments do their job... that things turn out differently than with all the past illnesses she's had like this over the last several yrs that led to such big setbacks.

 

[vmhoward]

Do you use anything like Scandical? This is a tasteless powder that you ca put in any foods to add calories. You can buy it through Axcan. It is about $35 a case. Not too bad. But worth it!

I hope she is able to put the pounds back on and I hope that she begins to feel better soon.

 

[vmhoward]

Do you use anything like Scandical? This is a tasteless powder that you ca put in any foods to add calories. You can buy it through Axcan. It is about $35 a case. Not too bad. But worth it!

I hope she is able to put the pounds back on and I hope that she begins to feel better soon.

 

[vmhoward]

Do you use anything like Scandical? This is a tasteless powder that you ca put in any foods to add calories. You can buy it through Axcan. It is about $35 a case. Not too bad. But worth it!

I hope she is able to put the pounds back on and I hope that she begins to feel better soon.

 

[vmhoward]

Do you use anything like Scandical? This is a tasteless powder that you ca put in any foods to add calories. You can buy it through Axcan. It is about $35 a case. Not too bad. But worth it!

I hope she is able to put the pounds back on and I hope that she begins to feel better soon.

 

[vmhoward]

Do you use anything like Scandical? This is a tasteless powder that you ca put in any foods to add calories. You can buy it through Axcan. It is about $35 a case. Not too bad. But worth it!
<br />
<br />I hope she is able to put the pounds back on and I hope that she begins to feel better soon.
<br />
<br />

 

[hmw]

Thank you Victoria. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope Garran is doing well! Fortunately, after she was finally dx'ed and put on Creon, she started putting on weight- she gained more weight in the last 5 months than she had in the 4 yrs preceding that. She has Carnation every day and I slip in extra fat whenever I can, but for the most part she was gaining weight at the rate of about a pound a month once she started her enzymes.

Now is the challenge though: to see about putting the weight back on *and* continuing to move upwards on the chart, since problems with this is what led to her growth failure of the last several yrs. I'll have to look into that powder, I have seen it mentioned here before but since Emily had started gaining weight w/o a problem I haven't really paid too much attention to that stuff.

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?

 

[hmw]

Thank you Victoria. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope Garran is doing well! Fortunately, after she was finally dx'ed and put on Creon, she started putting on weight- she gained more weight in the last 5 months than she had in the 4 yrs preceding that. She has Carnation every day and I slip in extra fat whenever I can, but for the most part she was gaining weight at the rate of about a pound a month once she started her enzymes.

Now is the challenge though: to see about putting the weight back on *and* continuing to move upwards on the chart, since problems with this is what led to her growth failure of the last several yrs. I'll have to look into that powder, I have seen it mentioned here before but since Emily had started gaining weight w/o a problem I haven't really paid too much attention to that stuff.

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?

 

[hmw]

Thank you Victoria. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope Garran is doing well! Fortunately, after she was finally dx'ed and put on Creon, she started putting on weight- she gained more weight in the last 5 months than she had in the 4 yrs preceding that. She has Carnation every day and I slip in extra fat whenever I can, but for the most part she was gaining weight at the rate of about a pound a month once she started her enzymes.

Now is the challenge though: to see about putting the weight back on *and* continuing to move upwards on the chart, since problems with this is what led to her growth failure of the last several yrs. I'll have to look into that powder, I have seen it mentioned here before but since Emily had started gaining weight w/o a problem I haven't really paid too much attention to that stuff.

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?

 

[hmw]

Thank you Victoria. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope Garran is doing well! Fortunately, after she was finally dx'ed and put on Creon, she started putting on weight- she gained more weight in the last 5 months than she had in the 4 yrs preceding that. She has Carnation every day and I slip in extra fat whenever I can, but for the most part she was gaining weight at the rate of about a pound a month once she started her enzymes.

Now is the challenge though: to see about putting the weight back on *and* continuing to move upwards on the chart, since problems with this is what led to her growth failure of the last several yrs. I'll have to look into that powder, I have seen it mentioned here before but since Emily had started gaining weight w/o a problem I haven't really paid too much attention to that stuff.

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?

 

[hmw]

Thank you Victoria. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope Garran is doing well! Fortunately, after she was finally dx'ed and put on Creon, she started putting on weight- she gained more weight in the last 5 months than she had in the 4 yrs preceding that. She has Carnation every day and I slip in extra fat whenever I can, but for the most part she was gaining weight at the rate of about a pound a month once she started her enzymes.
<br />
<br />Now is the challenge though: to see about putting the weight back on *and* continuing to move upwards on the chart, since problems with this is what led to her growth failure of the last several yrs. I'll have to look into that powder, I have seen it mentioned here before but since Emily had started gaining weight w/o a problem I haven't really paid too much attention to that stuff.
<br />
<br />I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?</end quote></div>


Dont feel silly. Its important to stay on top of things because a 1 pound here or there (even if not losing, but certainly not gaining) can make a difference in the long run!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?</end quote></div>


Dont feel silly. Its important to stay on top of things because a 1 pound here or there (even if not losing, but certainly not gaining) can make a difference in the long run!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?</end quote></div>


Dont feel silly. Its important to stay on top of things because a 1 pound here or there (even if not losing, but certainly not gaining) can make a difference in the long run!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?</end quote>


Dont feel silly. Its important to stay on top of things because a 1 pound here or there (even if not losing, but certainly not gaining) can make a difference in the long run!

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>
<br />
<br />I feel kind of silly worrying so much about 3 or 4 pounds but they were so hard won for her and it's been a monumental struggle for her for years. We went through hell to figure out why she couldn't get those pounds on, you know?</end quote>
<br />
<br />
<br />Dont feel silly. Its important to stay on top of things because a 1 pound here or there (even if not losing, but certainly not gaining) can make a difference in the long run!
<br />