New, Diagnosed at 6 days

[AKJen]

Christy,
Kaden has had the oily stool problem, but it has gotten better (we recently increased his enzyme dosage to one capsule of Creon) but he still really has the gassy/rumbling tummy. I've tried giving him Mylicon drops, which help a little, but I wish I could do more to help him! It hurts me to see him so uncomfortable. What are you using to give her the enzymes? I wonder if foods other than applesauce would make a difference... We also go to clinic next week, I'd be interested to hear what your GI doc says about it (I don't think we'll be seeing one).
I see our little ones also share a mutation - N1303K.
Jen

 

[AKJen]

Christy,
Kaden has had the oily stool problem, but it has gotten better (we recently increased his enzyme dosage to one capsule of Creon) but he still really has the gassy/rumbling tummy. I've tried giving him Mylicon drops, which help a little, but I wish I could do more to help him! It hurts me to see him so uncomfortable. What are you using to give her the enzymes? I wonder if foods other than applesauce would make a difference... We also go to clinic next week, I'd be interested to hear what your GI doc says about it (I don't think we'll be seeing one).
I see our little ones also share a mutation - N1303K.
Jen

 

[AKJen]

Christy,
Kaden has had the oily stool problem, but it has gotten better (we recently increased his enzyme dosage to one capsule of Creon) but he still really has the gassy/rumbling tummy. I've tried giving him Mylicon drops, which help a little, but I wish I could do more to help him! It hurts me to see him so uncomfortable. What are you using to give her the enzymes? I wonder if foods other than applesauce would make a difference... We also go to clinic next week, I'd be interested to hear what your GI doc says about it (I don't think we'll be seeing one).
I see our little ones also share a mutation - N1303K.
Jen

 

[AKJen]

Christy,
Kaden has had the oily stool problem, but it has gotten better (we recently increased his enzyme dosage to one capsule of Creon) but he still really has the gassy/rumbling tummy. I've tried giving him Mylicon drops, which help a little, but I wish I could do more to help him! It hurts me to see him so uncomfortable. What are you using to give her the enzymes? I wonder if foods other than applesauce would make a difference... We also go to clinic next week, I'd be interested to hear what your GI doc says about it (I don't think we'll be seeing one).
I see our little ones also share a mutation - N1303K.
Jen

 

[AKJen]

Christy,
<br />Kaden has had the oily stool problem, but it has gotten better (we recently increased his enzyme dosage to one capsule of Creon) but he still really has the gassy/rumbling tummy. I've tried giving him Mylicon drops, which help a little, but I wish I could do more to help him! It hurts me to see him so uncomfortable. What are you using to give her the enzymes? I wonder if foods other than applesauce would make a difference... We also go to clinic next week, I'd be interested to hear what your GI doc says about it (I don't think we'll be seeing one).
<br />I see our little ones also share a mutation - N1303K.
<br />Jen

 

[JennyCoulon]

Welcome to this wonderful site. You will find many parents whose children are ages 0-40? that will be able to give you a lot of insight. I was in your position with our first child about 9 years ago. (Wow I thought that we would never get through those days. You will find teenagers and adults with CF who can give you insight from the side of actually having CF.

If you have questions please do not hesitate to ask as we are a big family on here and are here if you need us. I know that it is a lot to take in so start slowly. Some of the information you will read can be scary and some of the information maybe will not apply to your particular situation. Give it 6 months and you will be a walking encyclopedia about CF, give it 9 years and your story may be the one helping some newly diagnosed family. Again welcome.

 

[JennyCoulon]

Welcome to this wonderful site. You will find many parents whose children are ages 0-40? that will be able to give you a lot of insight. I was in your position with our first child about 9 years ago. (Wow I thought that we would never get through those days. You will find teenagers and adults with CF who can give you insight from the side of actually having CF.

If you have questions please do not hesitate to ask as we are a big family on here and are here if you need us. I know that it is a lot to take in so start slowly. Some of the information you will read can be scary and some of the information maybe will not apply to your particular situation. Give it 6 months and you will be a walking encyclopedia about CF, give it 9 years and your story may be the one helping some newly diagnosed family. Again welcome.

 

[JennyCoulon]

Welcome to this wonderful site. You will find many parents whose children are ages 0-40? that will be able to give you a lot of insight. I was in your position with our first child about 9 years ago. (Wow I thought that we would never get through those days. You will find teenagers and adults with CF who can give you insight from the side of actually having CF.

If you have questions please do not hesitate to ask as we are a big family on here and are here if you need us. I know that it is a lot to take in so start slowly. Some of the information you will read can be scary and some of the information maybe will not apply to your particular situation. Give it 6 months and you will be a walking encyclopedia about CF, give it 9 years and your story may be the one helping some newly diagnosed family. Again welcome.

 

[JennyCoulon]

Welcome to this wonderful site. You will find many parents whose children are ages 0-40? that will be able to give you a lot of insight. I was in your position with our first child about 9 years ago. (Wow I thought that we would never get through those days. You will find teenagers and adults with CF who can give you insight from the side of actually having CF.

If you have questions please do not hesitate to ask as we are a big family on here and are here if you need us. I know that it is a lot to take in so start slowly. Some of the information you will read can be scary and some of the information maybe will not apply to your particular situation. Give it 6 months and you will be a walking encyclopedia about CF, give it 9 years and your story may be the one helping some newly diagnosed family. Again welcome.

 

[JennyCoulon]

Welcome to this wonderful site. You will find many parents whose children are ages 0-40? that will be able to give you a lot of insight. I was in your position with our first child about 9 years ago. (Wow I thought that we would never get through those days. You will find teenagers and adults with CF who can give you insight from the side of actually having CF.
<br />
<br />If you have questions please do not hesitate to ask as we are a big family on here and are here if you need us. I know that it is a lot to take in so start slowly. Some of the information you will read can be scary and some of the information maybe will not apply to your particular situation. Give it 6 months and you will be a walking encyclopedia about CF, give it 9 years and your story may be the one helping some newly diagnosed family. Again welcome.

 

[websterhome]

Jen,
Lucy's also on one capsule of Creon with each breastfeeding, I actually just put it on her tongue before the feeding & she's able to take it easily & quickly. I'm thankful to do it that way so I don't have to have applesauce nearby at 2am, 5am, etc... The dietician we see was pushing me towards using the applesauce because she was worried Lucy's oral mucosa would get sores, but we've seen absolutely no signs of it & our doctor feels totally comfortable with how we're doing. With the oily stools, they were thinking of increasing Lucy to 1 and a half capsules of Creon because of the oily stools, but decided against it because they're not always oily & her growth is wonderful - meaning she's obviously getting lots of nutrition already. The rummbling tummy... I have Mylicon drops here, but haven't used them because I don't want to add yet another med to her system & many people say they don't really work... (she's on creon, multivits, salt & zantac) Our doc started Lucy on Zantac a while back to help with the processing of the Creon & because she had mild reflux symptoms.
These little ones are sounding more & more like twins with their shared N1303K!
Christy

 

[websterhome]

Jen,
Lucy's also on one capsule of Creon with each breastfeeding, I actually just put it on her tongue before the feeding & she's able to take it easily & quickly. I'm thankful to do it that way so I don't have to have applesauce nearby at 2am, 5am, etc... The dietician we see was pushing me towards using the applesauce because she was worried Lucy's oral mucosa would get sores, but we've seen absolutely no signs of it & our doctor feels totally comfortable with how we're doing. With the oily stools, they were thinking of increasing Lucy to 1 and a half capsules of Creon because of the oily stools, but decided against it because they're not always oily & her growth is wonderful - meaning she's obviously getting lots of nutrition already. The rummbling tummy... I have Mylicon drops here, but haven't used them because I don't want to add yet another med to her system & many people say they don't really work... (she's on creon, multivits, salt & zantac) Our doc started Lucy on Zantac a while back to help with the processing of the Creon & because she had mild reflux symptoms.
These little ones are sounding more & more like twins with their shared N1303K!
Christy

 

[websterhome]

Jen,
Lucy's also on one capsule of Creon with each breastfeeding, I actually just put it on her tongue before the feeding & she's able to take it easily & quickly. I'm thankful to do it that way so I don't have to have applesauce nearby at 2am, 5am, etc... The dietician we see was pushing me towards using the applesauce because she was worried Lucy's oral mucosa would get sores, but we've seen absolutely no signs of it & our doctor feels totally comfortable with how we're doing. With the oily stools, they were thinking of increasing Lucy to 1 and a half capsules of Creon because of the oily stools, but decided against it because they're not always oily & her growth is wonderful - meaning she's obviously getting lots of nutrition already. The rummbling tummy... I have Mylicon drops here, but haven't used them because I don't want to add yet another med to her system & many people say they don't really work... (she's on creon, multivits, salt & zantac) Our doc started Lucy on Zantac a while back to help with the processing of the Creon & because she had mild reflux symptoms.
These little ones are sounding more & more like twins with their shared N1303K!
Christy

 

[websterhome]

Jen,
Lucy's also on one capsule of Creon with each breastfeeding, I actually just put it on her tongue before the feeding & she's able to take it easily & quickly. I'm thankful to do it that way so I don't have to have applesauce nearby at 2am, 5am, etc... The dietician we see was pushing me towards using the applesauce because she was worried Lucy's oral mucosa would get sores, but we've seen absolutely no signs of it & our doctor feels totally comfortable with how we're doing. With the oily stools, they were thinking of increasing Lucy to 1 and a half capsules of Creon because of the oily stools, but decided against it because they're not always oily & her growth is wonderful - meaning she's obviously getting lots of nutrition already. The rummbling tummy... I have Mylicon drops here, but haven't used them because I don't want to add yet another med to her system & many people say they don't really work... (she's on creon, multivits, salt & zantac) Our doc started Lucy on Zantac a while back to help with the processing of the Creon & because she had mild reflux symptoms.
These little ones are sounding more & more like twins with their shared N1303K!
Christy

 

[websterhome]

Jen,
<br />Lucy's also on one capsule of Creon with each breastfeeding, I actually just put it on her tongue before the feeding & she's able to take it easily & quickly. I'm thankful to do it that way so I don't have to have applesauce nearby at 2am, 5am, etc... The dietician we see was pushing me towards using the applesauce because she was worried Lucy's oral mucosa would get sores, but we've seen absolutely no signs of it & our doctor feels totally comfortable with how we're doing. With the oily stools, they were thinking of increasing Lucy to 1 and a half capsules of Creon because of the oily stools, but decided against it because they're not always oily & her growth is wonderful - meaning she's obviously getting lots of nutrition already. The rummbling tummy... I have Mylicon drops here, but haven't used them because I don't want to add yet another med to her system & many people say they don't really work... (she's on creon, multivits, salt & zantac) Our doc started Lucy on Zantac a while back to help with the processing of the Creon & because she had mild reflux symptoms.
<br />These little ones are sounding more & more like twins with their shared N1303K!
<br />Christy

 

[AKJen]

Christy,
Sounds like a good system for getting Lucy's enzymes down. I was pretty stressed about having to give Kaden solid food at such a young age but didn't feel like I had the option to not use something!
We went to clinic yesterday and he weighed in at 12 pounds! Yea! They also started him on Zantac for some reflux symptoms, and now the only time he seems to have a problem is when he takes his vitamins... Something else to call about! I feel like I need a private phone line to the doctor since I call so much <img src="i/expressions/face-icon-small-smile.gif" border="0"> His Creon was upped to one and a half, so I'm not using the Mylicon to see if the Zantac and Creon changes help the gas problem.
So much to figure out!
Jen

 

[AKJen]

Christy,
Sounds like a good system for getting Lucy's enzymes down. I was pretty stressed about having to give Kaden solid food at such a young age but didn't feel like I had the option to not use something!
We went to clinic yesterday and he weighed in at 12 pounds! Yea! They also started him on Zantac for some reflux symptoms, and now the only time he seems to have a problem is when he takes his vitamins... Something else to call about! I feel like I need a private phone line to the doctor since I call so much <img src="i/expressions/face-icon-small-smile.gif" border="0"> His Creon was upped to one and a half, so I'm not using the Mylicon to see if the Zantac and Creon changes help the gas problem.
So much to figure out!
Jen

 

[AKJen]

Christy,
Sounds like a good system for getting Lucy's enzymes down. I was pretty stressed about having to give Kaden solid food at such a young age but didn't feel like I had the option to not use something!
We went to clinic yesterday and he weighed in at 12 pounds! Yea! They also started him on Zantac for some reflux symptoms, and now the only time he seems to have a problem is when he takes his vitamins... Something else to call about! I feel like I need a private phone line to the doctor since I call so much <img src="i/expressions/face-icon-small-smile.gif" border="0"> His Creon was upped to one and a half, so I'm not using the Mylicon to see if the Zantac and Creon changes help the gas problem.
So much to figure out!
Jen

 

[AKJen]

Christy,
Sounds like a good system for getting Lucy's enzymes down. I was pretty stressed about having to give Kaden solid food at such a young age but didn't feel like I had the option to not use something!
We went to clinic yesterday and he weighed in at 12 pounds! Yea! They also started him on Zantac for some reflux symptoms, and now the only time he seems to have a problem is when he takes his vitamins... Something else to call about! I feel like I need a private phone line to the doctor since I call so much <img src="i/expressions/face-icon-small-smile.gif" border="0"> His Creon was upped to one and a half, so I'm not using the Mylicon to see if the Zantac and Creon changes help the gas problem.
So much to figure out!
Jen

 

[AKJen]

Christy,
<br />Sounds like a good system for getting Lucy's enzymes down. I was pretty stressed about having to give Kaden solid food at such a young age but didn't feel like I had the option to not use something!
<br />We went to clinic yesterday and he weighed in at 12 pounds! Yea! They also started him on Zantac for some reflux symptoms, and now the only time he seems to have a problem is when he takes his vitamins... Something else to call about! I feel like I need a private phone line to the doctor since I call so much <img src="i/expressions/face-icon-small-smile.gif" border="0"> His Creon was upped to one and a half, so I'm not using the Mylicon to see if the Zantac and Creon changes help the gas problem.
<br />So much to figure out!
<br />Jen