in need of help PLEASE

[MichelleinKY]

<img src="i/expressions/brokenheart.gif" border="0">not sure what is going on with Alyssa her bowels are changing they are becoming looser and more mucus is showing up her eating has went down a whole lot in the last couple of weeks I keep calling her CF office and all I hear is from the dietitian is well lets up her enzymes again and see if that helps. Well guess what it seems to be making everything worse I have told them that since uping her meds that she dont eat as much and her bowels are getting worse it is starting to scare the stuff out of me I just dont know what to do I am so tired of calling them and all they say is well lets try this or lets try that and nothing is working she is also starting to feel like she is loosing weight she dont seem to be as heavy as before I know when I had her at her last appointment 6/9 she weighed 17.2 and as of 7/26 she was 18.2 and she is 8 months old. I hope I wrote this to were you guys will understand what I'm talkin about just right now I'm scared and worried for my little girl she means the world to me she is my heart

 

[MichelleinKY]

<img src="i/expressions/brokenheart.gif" border="0">not sure what is going on with Alyssa her bowels are changing they are becoming looser and more mucus is showing up her eating has went down a whole lot in the last couple of weeks I keep calling her CF office and all I hear is from the dietitian is well lets up her enzymes again and see if that helps. Well guess what it seems to be making everything worse I have told them that since uping her meds that she dont eat as much and her bowels are getting worse it is starting to scare the stuff out of me I just dont know what to do I am so tired of calling them and all they say is well lets try this or lets try that and nothing is working she is also starting to feel like she is loosing weight she dont seem to be as heavy as before I know when I had her at her last appointment 6/9 she weighed 17.2 and as of 7/26 she was 18.2 and she is 8 months old. I hope I wrote this to were you guys will understand what I'm talkin about just right now I'm scared and worried for my little girl she means the world to me she is my heart

 

[MichelleinKY]

<img src="i/expressions/brokenheart.gif" border="0">not sure what is going on with Alyssa her bowels are changing they are becoming looser and more mucus is showing up her eating has went down a whole lot in the last couple of weeks I keep calling her CF office and all I hear is from the dietitian is well lets up her enzymes again and see if that helps. Well guess what it seems to be making everything worse I have told them that since uping her meds that she dont eat as much and her bowels are getting worse it is starting to scare the stuff out of me I just dont know what to do I am so tired of calling them and all they say is well lets try this or lets try that and nothing is working she is also starting to feel like she is loosing weight she dont seem to be as heavy as before I know when I had her at her last appointment 6/9 she weighed 17.2 and as of 7/26 she was 18.2 and she is 8 months old. I hope I wrote this to were you guys will understand what I'm talkin about just right now I'm scared and worried for my little girl she means the world to me she is my heart

 

[Ratatosk]

IMO, I would bring her in to the clinic. You don't want her to become dehydrated if she continues to have loose stools.

Have you spoken to a doctor or a nurse on behalf of the doctor or just the dietician?

 

[Ratatosk]

IMO, I would bring her in to the clinic. You don't want her to become dehydrated if she continues to have loose stools.

Have you spoken to a doctor or a nurse on behalf of the doctor or just the dietician?

 

[Ratatosk]

IMO, I would bring her in to the clinic. You don't want her to become dehydrated if she continues to have loose stools.
<br />
<br />Have you spoken to a doctor or a nurse on behalf of the doctor or just the dietician?

 

[zoe4life]

Has she been on antibiotics? If so, have them check for c-diff. Although c-diff usually is accompanied with fever, lethargic, no energy, but frequent very loose stools.

 

[zoe4life]

Has she been on antibiotics? If so, have them check for c-diff. Although c-diff usually is accompanied with fever, lethargic, no energy, but frequent very loose stools.

 

[zoe4life]

Has she been on antibiotics? If so, have them check for c-diff. Although c-diff usually is accompanied with fever, lethargic, no energy, but frequent very loose stools.

 

[JORDYSMOM]

It's true that getting enzyme dosages right sometimes takes a little trial & error, but if you're not feeling comfortable with the dietician, go directly to her doctor.

It's good that she gained a pound in a month. I hope the trend continues for her.

Stacey

 

[JORDYSMOM]

It's true that getting enzyme dosages right sometimes takes a little trial & error, but if you're not feeling comfortable with the dietician, go directly to her doctor.

It's good that she gained a pound in a month. I hope the trend continues for her.

Stacey

 

[JORDYSMOM]

It's true that getting enzyme dosages right sometimes takes a little trial & error, but if you're not feeling comfortable with the dietician, go directly to her doctor.
<br />
<br />It's good that she gained a pound in a month. I hope the trend continues for her.
<br />
<br />Stacey

 

[angelsmom]

I agree with others who have said to talk to the nurse. When is your next scheduled cliic visit? If it is weeks or months away, demand that your daughter be seen sooner if you really feel she should be. If they can't fit you in, see your family doctor and maybe they can communicate with your CF clinic.

 

[angelsmom]

I agree with others who have said to talk to the nurse. When is your next scheduled cliic visit? If it is weeks or months away, demand that your daughter be seen sooner if you really feel she should be. If they can't fit you in, see your family doctor and maybe they can communicate with your CF clinic.

 

[angelsmom]

I agree with others who have said to talk to the nurse. When is your next scheduled cliic visit? If it is weeks or months away, demand that your daughter be seen sooner if you really feel she should be. If they can't fit you in, see your family doctor and maybe they can communicate with your CF clinic.
<br />
<br />

 

[NancyLKF]

Hi. We just had a similar situation. Maggie's diapers were messier and messier and then basically just oil. Her CF doctor immediately said that her body was rejecting the enzymes and switched the brand she was on. She had been on pancreacarb which was working great. When that didn't get approved she was switched to Creon. She gained less than a pound in 3 months and like I said... diapers were messier by the day. Since she has switched to Zen-pep she has been improving. Much more solid poops! I obviously don't know if that's what's happening with your daughter, but sometimes a particular enzyme brand just doesn't work for a particular person.. even if it seemed to be working before.

 

[NancyLKF]

Hi. We just had a similar situation. Maggie's diapers were messier and messier and then basically just oil. Her CF doctor immediately said that her body was rejecting the enzymes and switched the brand she was on. She had been on pancreacarb which was working great. When that didn't get approved she was switched to Creon. She gained less than a pound in 3 months and like I said... diapers were messier by the day. Since she has switched to Zen-pep she has been improving. Much more solid poops! I obviously don't know if that's what's happening with your daughter, but sometimes a particular enzyme brand just doesn't work for a particular person.. even if it seemed to be working before.

 

[NancyLKF]

Hi. We just had a similar situation. Maggie's diapers were messier and messier and then basically just oil. Her CF doctor immediately said that her body was rejecting the enzymes and switched the brand she was on. She had been on pancreacarb which was working great. When that didn't get approved she was switched to Creon. She gained less than a pound in 3 months and like I said... diapers were messier by the day. Since she has switched to Zen-pep she has been improving. Much more solid poops! I obviously don't know if that's what's happening with your daughter, but sometimes a particular enzyme brand just doesn't work for a particular person.. even if it seemed to be working before.

 

[oz2275]

Her weight sounds okay to me... my Abby is only about 22.5 lbs at 15 months old & with her length her BMI is staying at or above the 50th percentile.

We've also found that it takes some trial & error with the enzymes. Also, is she teething? Abby's stools get looser with teeth coming in. Some days, it's hard to tell what's causing her stools to be the way they are. Can you check with your pediatrician? Ours is really helpful & if he feels it is not typical baby stuff, he sends us to our CF clinic. Also, ours allows us to come in for a weight check (even though we have our own scale at home too) then it is on record if she does lose weight. He's usually helpful to relieve our concerns. Is she still active or is she more lethargic? That's usually a sign for us that Abby is not feeling well.

Good luck!

 

[oz2275]

Her weight sounds okay to me... my Abby is only about 22.5 lbs at 15 months old & with her length her BMI is staying at or above the 50th percentile.

We've also found that it takes some trial & error with the enzymes. Also, is she teething? Abby's stools get looser with teeth coming in. Some days, it's hard to tell what's causing her stools to be the way they are. Can you check with your pediatrician? Ours is really helpful & if he feels it is not typical baby stuff, he sends us to our CF clinic. Also, ours allows us to come in for a weight check (even though we have our own scale at home too) then it is on record if she does lose weight. He's usually helpful to relieve our concerns. Is she still active or is she more lethargic? That's usually a sign for us that Abby is not feeling well.

Good luck!