Saw CF specialist, starting creon enzymes today

[Mistyjo]

<P>We saw the cf specialist yesterday.  My daughter lost a little weight.  She hasn't gained any weight in almost 2 yrs.  She's getting taller, but no weight gain with it.  Her BMI was 3% last yr, now that shes a little taller I'm sure it's even less than that.  </P>
<P>She is starting creon today in hopes that the enzymes will help with weight gain.  </P>
<P>She had x-ray for colorectal surgeon to make sure she is emptying her bowels and she had significant amount of stool in rectum.  Now we have to increase the ex-lax to 5 squares a day.  I was very disappointed yesterday.  I'm trying to pull myself out of it today. </P>
<P>Any advice with the creon?  I appreciate any advice.  Thanks!</P>

 

[Mistyjo]

<P>We saw the cf specialist yesterday. My daughter lost a little weight. She hasn't gained any weight in almost 2 yrs. She's getting taller, but no weight gain with it. Her BMI was 3% last yr, now that shes a little taller I'm sure it's even less than that. </P>
<P>She is starting creon today in hopes that the enzymes will help with weight gain. </P>
<P>She had x-ray for colorectal surgeon to make sure she is emptying her bowels and she had significant amount of stool in rectum. Now we have to increase the ex-lax to 5 squares a day. I was very disappointed yesterday. I'm trying to pull myself out of it today. </P>
<P>Any advice with the creon? I appreciate any advice. Thanks!</P>

 

[Mistyjo]

<P><BR>We saw the cf specialist yesterday. My daughter lost a little weight. She hasn't gained any weight in almost 2 yrs. She's getting taller, but no weight gain with it. Her BMI was 3% last yr, now that shes a little taller I'm sure it's even less than that. </P>
<P>She is starting creon today in hopes that the enzymes will help with weight gain. </P>
<P>She had x-ray for colorectal surgeon to make sure she is emptying her bowels and she had significant amount of stool in rectum. Now we have to increase the ex-lax to 5 squares a day. I was very disappointed yesterday. I'm trying to pull myself out of it today. </P>
<P>Any advice with the creon? I appreciate any advice. Thanks!</P>

 

[kitomd21]

It's a little concerning that they let her weight drop so much prior to addressing enzymes. Her CF center may be great, but enzyme dosing/inaccuracy and failure with DD's initial center to push for the minimum recommendation of 50% weight:length (not 3%!) was the main reason why we switched to another center. We asked about feeding tubes, the old center said not unless she failed to follow a growth curve. Unacceptable when the CFF recommends much higher than where my daughter was at 12%. DD doesn't have a feeding tube but has since gained weight beyond the 50% mark...I attribute that change to a "better" and "proactive" CF center.

What else is your daughter's center addressing? Not that DD's daughter is perfect, but they do address how important nutrition is for their health. I know your question addressed advice regarding Creon - sorry for the tangent!!

 

[kitomd21]

It's a little concerning that they let her weight drop so much prior to addressing enzymes. Her CF center may be great, but enzyme dosing/inaccuracy and failure with DD's initial center to push for the minimum recommendation of 50% weight:length (not 3%!) was the main reason why we switched to another center. We asked about feeding tubes, the old center said not unless she failed to follow a growth curve. Unacceptable when the CFF recommends much higher than where my daughter was at 12%. DD doesn't have a feeding tube but has since gained weight beyond the 50% mark...I attribute that change to a "better" and "proactive" CF center.

What else is your daughter's center addressing? Not that DD's daughter is perfect, but they do address how important nutrition is for their health. I know your question addressed advice regarding Creon - sorry for the tangent!!

 

[kitomd21]

It's a little concerning that they let her weight drop so much prior to addressing enzymes. Her CF center may be great, but enzyme dosing/inaccuracy and failure with DD's initial center to push for the minimum recommendation of 50% weight:length (not 3%!) was the main reason why we switched to another center. We asked about feeding tubes, the old center said not unless she failed to follow a growth curve. Unacceptable when the CFF recommends much higher than where my daughter was at 12%. DD doesn't have a feeding tube but has since gained weight beyond the 50% mark...I attribute that change to a "better" and "proactive" CF center.
<br />
<br />What else is your daughter's center addressing? Not that DD's daughter is perfect, but they do address how important nutrition is for their health. I know your question addressed advice regarding Creon - sorry for the tangent!!
<br />
<br />

 

[Mistyjo]

The reason she is just starting the enzymes is she was just recently diagnosed with cf metabolic syndrome. She had bowel resection surgery in June and they tested her colon tissue for cftr function and basically there is NO cftr function in her colon so it was positive for cf. The cf specialist wanted to wait until she healed from her surgery before starting enzymes. It's been several weeks since her surgery so now we can start the enzymes and hope that they will work.

 

[Mistyjo]

The reason she is just starting the enzymes is she was just recently diagnosed with cf metabolic syndrome. She had bowel resection surgery in June and they tested her colon tissue for cftr function and basically there is NO cftr function in her colon so it was positive for cf. The cf specialist wanted to wait until she healed from her surgery before starting enzymes. It's been several weeks since her surgery so now we can start the enzymes and hope that they will work.

 

[Mistyjo]

The reason she is just starting the enzymes is she was just recently diagnosed with cf metabolic syndrome. She had bowel resection surgery in June and they tested her colon tissue for cftr function and basically there is NO cftr function in her colon so it was positive for cf. The cf specialist wanted to wait until she healed from her surgery before starting enzymes. It's been several weeks since her surgery so now we can start the enzymes and hope that they will work.

 

[Ratatosk]

I'm just surprised they have her use a stimulant laxative like exlax instead of miralax. One thing that DS' doctor mentioned when we had issues with constipation with him as a baby was that one's first thought would be to decrease the amount of enzymes to get things moving again; however, one shouldn't as it could lead to more issues. Hopefully the enzymes will help her put on some weight and maybe stabilize her digestive issues.

 

[Ratatosk]

I'm just surprised they have her use a stimulant laxative like exlax instead of miralax. One thing that DS' doctor mentioned when we had issues with constipation with him as a baby was that one's first thought would be to decrease the amount of enzymes to get things moving again; however, one shouldn't as it could lead to more issues. Hopefully the enzymes will help her put on some weight and maybe stabilize her digestive issues.

 

[Ratatosk]

I'm just surprised they have her use a stimulant laxative like exlax instead of miralax. One thing that DS' doctor mentioned when we had issues with constipation with him as a baby was that one's first thought would be to decrease the amount of enzymes to get things moving again; however, one shouldn't as it could lead to more issues. Hopefully the enzymes will help her put on some weight and maybe stabilize her digestive issues.

 

[hmw]

I am so glad she'll be giving the enzymes a try and I hope it helps her!!

I know that she hasn't had success with Miralax in the past but it worries me that they are increasing the exlax; I wonder how much dependency is playing into her need for it by now. I hope the enzymes help and that her muscles, etc can learn to work on their own and eventually make the stimulant less necessary. I would consider a daily dose (at least a cap a day, taken with a lot of clear fluid) of Miralax while continuing the exlax and enzymes and over time seeing if things improve and then trying an extremely slow reduction of the stimulant.

Wishing the very very best!!

 

[hmw]

I am so glad she'll be giving the enzymes a try and I hope it helps her!!

I know that she hasn't had success with Miralax in the past but it worries me that they are increasing the exlax; I wonder how much dependency is playing into her need for it by now. I hope the enzymes help and that her muscles, etc can learn to work on their own and eventually make the stimulant less necessary. I would consider a daily dose (at least a cap a day, taken with a lot of clear fluid) of Miralax while continuing the exlax and enzymes and over time seeing if things improve and then trying an extremely slow reduction of the stimulant.

Wishing the very very best!!

 

[hmw]

I am so glad she'll be giving the enzymes a try and I hope it helps her!!
<br />
<br />I know that she hasn't had success with Miralax in the past but it worries me that they are increasing the exlax; I wonder how much dependency is playing into her need for it by now. I hope the enzymes help and that her muscles, etc can learn to work on their own and eventually make the stimulant less necessary. I would consider a daily dose (at least a cap a day, taken with a lot of clear fluid) of Miralax while continuing the exlax and enzymes and over time seeing if things improve and then trying an extremely slow reduction of the stimulant.
<br />
<br />Wishing the very very best!!