Going onto enzymes

[Mommafirst]

Alyssa had her first annual visit today. It went okay, but we were bombarded with information -- as usual. The most concerning thing is that her weight is just stalled at 17lbs (she'll be 1 next week). She's been fluctuating around 17lbs since September. So they were just not happy with it. She cultured four different things, three being typical CF stuff (I don't remember what, but not any of the big deal ones) and the other being the pneumonia one. So they are putting her on Augmentin to deal with the bugs in case they are keeping her from gaining weight. And, even though she is still pancreatic sufficient, they want to put her on enzymes in the hope that she will gain weight better. They wonder if the weight thing might be a sign that she is losing the sufficiency, plus they feel that the enzymes will protect against pancreatitis.<br>
<br>
Anyone else PS and take enzymes??<br>
<br>
For some reason this development upset me, I guess just makes the whole CF thing more real. Pretty much the pulm said that he was surprised at her progression, he had high hopes from her mutations and PS that she wouldn't have the weight gain and culturing issues this soon. At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!

 

[Mommafirst]

Alyssa had her first annual visit today. It went okay, but we were bombarded with information -- as usual. The most concerning thing is that her weight is just stalled at 17lbs (she'll be 1 next week). She's been fluctuating around 17lbs since September. So they were just not happy with it. She cultured four different things, three being typical CF stuff (I don't remember what, but not any of the big deal ones) and the other being the pneumonia one. So they are putting her on Augmentin to deal with the bugs in case they are keeping her from gaining weight. And, even though she is still pancreatic sufficient, they want to put her on enzymes in the hope that she will gain weight better. They wonder if the weight thing might be a sign that she is losing the sufficiency, plus they feel that the enzymes will protect against pancreatitis.<br>
<br>
Anyone else PS and take enzymes??<br>
<br>
For some reason this development upset me, I guess just makes the whole CF thing more real. Pretty much the pulm said that he was surprised at her progression, he had high hopes from her mutations and PS that she wouldn't have the weight gain and culturing issues this soon. At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!

 

[Mommafirst]

Alyssa had her first annual visit today. It went okay, but we were bombarded with information -- as usual. The most concerning thing is that her weight is just stalled at 17lbs (she'll be 1 next week). She's been fluctuating around 17lbs since September. So they were just not happy with it. She cultured four different things, three being typical CF stuff (I don't remember what, but not any of the big deal ones) and the other being the pneumonia one. So they are putting her on Augmentin to deal with the bugs in case they are keeping her from gaining weight. And, even though she is still pancreatic sufficient, they want to put her on enzymes in the hope that she will gain weight better. They wonder if the weight thing might be a sign that she is losing the sufficiency, plus they feel that the enzymes will protect against pancreatitis.<br>
<br>
Anyone else PS and take enzymes??<br>
<br>
For some reason this development upset me, I guess just makes the whole CF thing more real. Pretty much the pulm said that he was surprised at her progression, he had high hopes from her mutations and PS that she wouldn't have the weight gain and culturing issues this soon. At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!

 

[annonymous]

Oh momma Heather.....I have no real words of advice for you. Just wanted to send a BIG hug your way! If only there were something I could do or say to make it all go away.....

Thinking of you,
Misty

 

[annonymous]

Oh momma Heather.....I have no real words of advice for you. Just wanted to send a BIG hug your way! If only there were something I could do or say to make it all go away.....

Thinking of you,
Misty

 

[annonymous]

Oh momma Heather.....I have no real words of advice for you. Just wanted to send a BIG hug your way! If only there were something I could do or say to make it all go away.....

Thinking of you,
Misty

 

[Emily65Roses]

I know any new addition is no fun, but of all the things that she needs to be on, enzymes are one of the best. In other words... be glad they didn't want to throw new nebs or inhalers or IVs or feeding tubes at her... and just went for enzymes. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of us live on enzymes our whole lives, as I'm sure you know.

I'm personally not pancreatic sufficient... but for several years as a teenager, I stopped taking my enzymes. I had gained 50 lbs in a year (birth control and anti-depressants) and went on a diet. As such, I was eating stuff with very little fat in it (chicken breast, pretzels, salad, etc), so when I did take my enzymes I got constipated. So I stopped taking them for years, and was able to lose the excess weight. At the same time, I wasn't unhealthy, and I was doing okay (my doctors were aware of the diet). So I do definitely have diarrhea/gas problems, but I'm probably more pancreatic sufficient than some others. I've never really had a problem keeping weight on either. I'm small, but I'm not sickly underweight. Always been a good weight for my height.

Anyway, that was a lot of blabbering, but you asked if any of us were pancreatic sufficient and still on enzymes, and that's the best story I have regarding that for myself. Sorry the enzymes threw you off, but they're fairly easy when compared to everything else that floats around. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

I know any new addition is no fun, but of all the things that she needs to be on, enzymes are one of the best. In other words... be glad they didn't want to throw new nebs or inhalers or IVs or feeding tubes at her... and just went for enzymes. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of us live on enzymes our whole lives, as I'm sure you know.

I'm personally not pancreatic sufficient... but for several years as a teenager, I stopped taking my enzymes. I had gained 50 lbs in a year (birth control and anti-depressants) and went on a diet. As such, I was eating stuff with very little fat in it (chicken breast, pretzels, salad, etc), so when I did take my enzymes I got constipated. So I stopped taking them for years, and was able to lose the excess weight. At the same time, I wasn't unhealthy, and I was doing okay (my doctors were aware of the diet). So I do definitely have diarrhea/gas problems, but I'm probably more pancreatic sufficient than some others. I've never really had a problem keeping weight on either. I'm small, but I'm not sickly underweight. Always been a good weight for my height.

Anyway, that was a lot of blabbering, but you asked if any of us were pancreatic sufficient and still on enzymes, and that's the best story I have regarding that for myself. Sorry the enzymes threw you off, but they're fairly easy when compared to everything else that floats around. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

I know any new addition is no fun, but of all the things that she needs to be on, enzymes are one of the best. In other words... be glad they didn't want to throw new nebs or inhalers or IVs or feeding tubes at her... and just went for enzymes. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Most of us live on enzymes our whole lives, as I'm sure you know.

I'm personally not pancreatic sufficient... but for several years as a teenager, I stopped taking my enzymes. I had gained 50 lbs in a year (birth control and anti-depressants) and went on a diet. As such, I was eating stuff with very little fat in it (chicken breast, pretzels, salad, etc), so when I did take my enzymes I got constipated. So I stopped taking them for years, and was able to lose the excess weight. At the same time, I wasn't unhealthy, and I was doing okay (my doctors were aware of the diet). So I do definitely have diarrhea/gas problems, but I'm probably more pancreatic sufficient than some others. I've never really had a problem keeping weight on either. I'm small, but I'm not sickly underweight. Always been a good weight for my height.

Anyway, that was a lot of blabbering, but you asked if any of us were pancreatic sufficient and still on enzymes, and that's the best story I have regarding that for myself. Sorry the enzymes threw you off, but they're fairly easy when compared to everything else that floats around. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ktsmom]

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

At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!</end quote></div>

I'm sorry; I understand this was tough to hear. It's like permanently waiting for the other shoe to drop.

We waltzed out of our initial visit thinking "mild" only to turn out that Katy's first round of tests showed she cultured PA and had elevated liver counts.

Hang tough; I'm dreading our next appointment on Feb. 1st because it seems to me Katy's weight has stalled out as well. I hate this. We understand how you feel.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

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

At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!</end quote></div>

I'm sorry; I understand this was tough to hear. It's like permanently waiting for the other shoe to drop.

We waltzed out of our initial visit thinking "mild" only to turn out that Katy's first round of tests showed she cultured PA and had elevated liver counts.

Hang tough; I'm dreading our next appointment on Feb. 1st because it seems to me Katy's weight has stalled out as well. I hate this. We understand how you feel.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

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

At least from this site I knew enough to not put too much stock in the idea of "mild", so I wasn't shocked by his statement. But it was still a bit tough. Thanks for listening!!</end quote></div>

I'm sorry; I understand this was tough to hear. It's like permanently waiting for the other shoe to drop.

We waltzed out of our initial visit thinking "mild" only to turn out that Katy's first round of tests showed she cultured PA and had elevated liver counts.

Hang tough; I'm dreading our next appointment on Feb. 1st because it seems to me Katy's weight has stalled out as well. I hate this. We understand how you feel.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[sjzbell]

Heather,

I read your entry & just wanted to let you know we've done the EXACT same thing. So I'm right there with you. My little guy was diagnosed 5 yrs ago (this past Nov.). I thank God every day that we are as lucky as we are w/ him having the different gene that makes his CF "mild". But you're right, you can't take the word "mild" very lightly sometimes.

We were on enzymes since day 1. About 9 mos ago, a new doc came into the office & looked at his file & decided since he is supposidly "pancreatic SUFFicient", that we didn't need them & promptly took him off of them. We maintained weight until we went back for our checkup last week.....he lost weight, so we're back on enzymes. I guess you just never know until you try, sometimes, but when on them, he was gaining anywhere from 1/2-3 lbs EVERY 3 mo visit. Why ruin a good thing? I mean, that's how we found out about the CF in the first place--because he was marked "failure to thrive". So obviously they helped the first time.....Anyway, I won't rag on the docs. They've been very good overall. Just the one incident that she really didn't want to hear mom's opinion.

So, from being on, going off, & now back on, I'm in touch w/ your emotions! We've been lucky we haven't cultured anything for a year now. We cultured psudomonis over a year ago, hit it hard w/ TOBI & antibiotics & by God's grace we got rid of it. And Emily is right, I'm grateful for you that it was just enzymes & not nebs or the other tuf stuff. Like I said, my son has been fortunate to have the minimal meds & nebs. When I read these posts & what some of the CFr's are going thru, it rips my heart out to think that there's always a chance that we'll go down that road someday. Boy, that's really depressing when I re-read it! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I don't want to be that way, but I've found that honesty is the only way with this. If something's hard, it's easier to get thru knowing that it's there instead of pretending it couldn't happen to me/you/him/her. I know I say "we" a lot, but I also consider it my battle as well as my son's. We'll fight it together!

Sorry to carry on. This is my first post ever, altho I've been reading for years! Feel free to email me if you'd like. sjzbell@yahoo.com

Thinking of you,
Shannon
mom to Hunter (6, w/ CF) & Chase (8, no CF/nc)

 

[sjzbell]

Heather,

I read your entry & just wanted to let you know we've done the EXACT same thing. So I'm right there with you. My little guy was diagnosed 5 yrs ago (this past Nov.). I thank God every day that we are as lucky as we are w/ him having the different gene that makes his CF "mild". But you're right, you can't take the word "mild" very lightly sometimes.

We were on enzymes since day 1. About 9 mos ago, a new doc came into the office & looked at his file & decided since he is supposidly "pancreatic SUFFicient", that we didn't need them & promptly took him off of them. We maintained weight until we went back for our checkup last week.....he lost weight, so we're back on enzymes. I guess you just never know until you try, sometimes, but when on them, he was gaining anywhere from 1/2-3 lbs EVERY 3 mo visit. Why ruin a good thing? I mean, that's how we found out about the CF in the first place--because he was marked "failure to thrive". So obviously they helped the first time.....Anyway, I won't rag on the docs. They've been very good overall. Just the one incident that she really didn't want to hear mom's opinion.

So, from being on, going off, & now back on, I'm in touch w/ your emotions! We've been lucky we haven't cultured anything for a year now. We cultured psudomonis over a year ago, hit it hard w/ TOBI & antibiotics & by God's grace we got rid of it. And Emily is right, I'm grateful for you that it was just enzymes & not nebs or the other tuf stuff. Like I said, my son has been fortunate to have the minimal meds & nebs. When I read these posts & what some of the CFr's are going thru, it rips my heart out to think that there's always a chance that we'll go down that road someday. Boy, that's really depressing when I re-read it! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I don't want to be that way, but I've found that honesty is the only way with this. If something's hard, it's easier to get thru knowing that it's there instead of pretending it couldn't happen to me/you/him/her. I know I say "we" a lot, but I also consider it my battle as well as my son's. We'll fight it together!

Sorry to carry on. This is my first post ever, altho I've been reading for years! Feel free to email me if you'd like. sjzbell@yahoo.com

Thinking of you,
Shannon
mom to Hunter (6, w/ CF) & Chase (8, no CF/nc)

 

[sjzbell]

Heather,

I read your entry & just wanted to let you know we've done the EXACT same thing. So I'm right there with you. My little guy was diagnosed 5 yrs ago (this past Nov.). I thank God every day that we are as lucky as we are w/ him having the different gene that makes his CF "mild". But you're right, you can't take the word "mild" very lightly sometimes.

We were on enzymes since day 1. About 9 mos ago, a new doc came into the office & looked at his file & decided since he is supposidly "pancreatic SUFFicient", that we didn't need them & promptly took him off of them. We maintained weight until we went back for our checkup last week.....he lost weight, so we're back on enzymes. I guess you just never know until you try, sometimes, but when on them, he was gaining anywhere from 1/2-3 lbs EVERY 3 mo visit. Why ruin a good thing? I mean, that's how we found out about the CF in the first place--because he was marked "failure to thrive". So obviously they helped the first time.....Anyway, I won't rag on the docs. They've been very good overall. Just the one incident that she really didn't want to hear mom's opinion.

So, from being on, going off, & now back on, I'm in touch w/ your emotions! We've been lucky we haven't cultured anything for a year now. We cultured psudomonis over a year ago, hit it hard w/ TOBI & antibiotics & by God's grace we got rid of it. And Emily is right, I'm grateful for you that it was just enzymes & not nebs or the other tuf stuff. Like I said, my son has been fortunate to have the minimal meds & nebs. When I read these posts & what some of the CFr's are going thru, it rips my heart out to think that there's always a chance that we'll go down that road someday. Boy, that's really depressing when I re-read it! <img src="i/expressions/face-icon-small-sad.gif" border="0"> I don't want to be that way, but I've found that honesty is the only way with this. If something's hard, it's easier to get thru knowing that it's there instead of pretending it couldn't happen to me/you/him/her. I know I say "we" a lot, but I also consider it my battle as well as my son's. We'll fight it together!

Sorry to carry on. This is my first post ever, altho I've been reading for years! Feel free to email me if you'd like. sjzbell@yahoo.com

Thinking of you,
Shannon
mom to Hunter (6, w/ CF) & Chase (8, no CF/nc)

 

[Mommafirst]

Thanks for coming out of lurking for me, Shannon!!! It is so comforting to hear the stories of others and know we aren't alone. Even when the stories scare the bejeezes out of you, LOL!!!

I am thankful that my daughter didn't culture anything worse and that TOBI and other things are still not on our plate. I'm very glad to hear the enzymes helped your son gain weight, and that gives me hope that they will help my daughter.

 

[Mommafirst]

Thanks for coming out of lurking for me, Shannon!!! It is so comforting to hear the stories of others and know we aren't alone. Even when the stories scare the bejeezes out of you, LOL!!!

I am thankful that my daughter didn't culture anything worse and that TOBI and other things are still not on our plate. I'm very glad to hear the enzymes helped your son gain weight, and that gives me hope that they will help my daughter.

 

[Mommafirst]

Thanks for coming out of lurking for me, Shannon!!! It is so comforting to hear the stories of others and know we aren't alone. Even when the stories scare the bejeezes out of you, LOL!!!

I am thankful that my daughter didn't culture anything worse and that TOBI and other things are still not on our plate. I'm very glad to hear the enzymes helped your son gain weight, and that gives me hope that they will help my daughter.

 

[kenninikki]

I just wanted to say hi because you are the first person I have met with a child that is pancreatic sufficient. My son is that and was diagnosed Sept of 2006. He is almost 3 now. Kendra

 

[kenninikki]

I just wanted to say hi because you are the first person I have met with a child that is pancreatic sufficient. My son is that and was diagnosed Sept of 2006. He is almost 3 now. Kendra