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Paige Update

C

ctalbott0609

New member
Well, we went to Dr. Black's office today, instead of Friday. I called yesterday because she had began coughing, and wheezing more, as well as a few other things, and they asked us to be up there at 9:30 AM. We also took my son because Dr. Black had wanted him to get a sweat test done.

They got Paige's Genetics Test Results back, and her first mutation is DF508 and her second is G542X. As everyone knows, DF508 is super common, so we're safe there! G542X is not AS common, but it is common, and they said that a ton of research is being focused on that right now, and that they expect HUGE improvements in the next 10 years.

They think that her cough, wheezing, blowouts, and spit-up are all from over feeding. They don't think the Enzymes are getting a chance to work well enough, so they adjusted almost EVERYTHING.

They cut her dose of Zantac down to .75 ml 4 times a day, and they want me to DECREASE her feedings. They said she's gaining 41g a day, and they want her only gaining 29g. So, their solution is, to only feed her 4 oz. every 3 - 4 hours. No matter what.

What I don't understand, is how am I supposed to let my daughter scream because she's hungry?!?! We went rounds on this today, and they won, because ultimately, I WILL do what's best for Paige, but I still don't understand how I'm just supposed to deal with it all. I have faith though, and we'll get through that.

They also ordered Chest X-Rays, and did a throat culture to rule out infection for sure.

We also signed up for the Formula Study today. We got our first box of Formula. It's liquid form, and ready to go. It should make our feedings quite a bit easier! I'm excited to try it, and I'm praying that it works, and that we got the good stuff! They also sent me home with stool sample collection kits...they come with the study...<img src="i/expressions/face-icon-small-sad.gif" border="0"> I dislike poo very much lol.

Anyways, Paige's weight is up to 9lbs 14oz and she's 22in long! They also re-scheduled Matt's Sweat Test, they don't think it's a necessity right now, and they want to wait until our next visit. Sometimes I think they forget how hard it is to drag your infant AND your preschooler, on a 3 hour drive! lol

Well, before I go, I would like to know if there are any other kids or adults out there with the same mutations? I'd like to get an idea of how this will effect her. I didn't get much of a chance to ask any questions, because setting us up for the Formula Study took sooo long, and was sooo much paperwork.

Thanks everyone!
 
C

ctalbott0609

New member
Well, we went to Dr. Black's office today, instead of Friday. I called yesterday because she had began coughing, and wheezing more, as well as a few other things, and they asked us to be up there at 9:30 AM. We also took my son because Dr. Black had wanted him to get a sweat test done.

They got Paige's Genetics Test Results back, and her first mutation is DF508 and her second is G542X. As everyone knows, DF508 is super common, so we're safe there! G542X is not AS common, but it is common, and they said that a ton of research is being focused on that right now, and that they expect HUGE improvements in the next 10 years.

They think that her cough, wheezing, blowouts, and spit-up are all from over feeding. They don't think the Enzymes are getting a chance to work well enough, so they adjusted almost EVERYTHING.

They cut her dose of Zantac down to .75 ml 4 times a day, and they want me to DECREASE her feedings. They said she's gaining 41g a day, and they want her only gaining 29g. So, their solution is, to only feed her 4 oz. every 3 - 4 hours. No matter what.

What I don't understand, is how am I supposed to let my daughter scream because she's hungry?!?! We went rounds on this today, and they won, because ultimately, I WILL do what's best for Paige, but I still don't understand how I'm just supposed to deal with it all. I have faith though, and we'll get through that.

They also ordered Chest X-Rays, and did a throat culture to rule out infection for sure.

We also signed up for the Formula Study today. We got our first box of Formula. It's liquid form, and ready to go. It should make our feedings quite a bit easier! I'm excited to try it, and I'm praying that it works, and that we got the good stuff! They also sent me home with stool sample collection kits...they come with the study...<img src="i/expressions/face-icon-small-sad.gif" border="0"> I dislike poo very much lol.

Anyways, Paige's weight is up to 9lbs 14oz and she's 22in long! They also re-scheduled Matt's Sweat Test, they don't think it's a necessity right now, and they want to wait until our next visit. Sometimes I think they forget how hard it is to drag your infant AND your preschooler, on a 3 hour drive! lol

Well, before I go, I would like to know if there are any other kids or adults out there with the same mutations? I'd like to get an idea of how this will effect her. I didn't get much of a chance to ask any questions, because setting us up for the Formula Study took sooo long, and was sooo much paperwork.

Thanks everyone!
 
C

ctalbott0609

New member
Well, we went to Dr. Black's office today, instead of Friday. I called yesterday because she had began coughing, and wheezing more, as well as a few other things, and they asked us to be up there at 9:30 AM. We also took my son because Dr. Black had wanted him to get a sweat test done.

They got Paige's Genetics Test Results back, and her first mutation is DF508 and her second is G542X. As everyone knows, DF508 is super common, so we're safe there! G542X is not AS common, but it is common, and they said that a ton of research is being focused on that right now, and that they expect HUGE improvements in the next 10 years.

They think that her cough, wheezing, blowouts, and spit-up are all from over feeding. They don't think the Enzymes are getting a chance to work well enough, so they adjusted almost EVERYTHING.

They cut her dose of Zantac down to .75 ml 4 times a day, and they want me to DECREASE her feedings. They said she's gaining 41g a day, and they want her only gaining 29g. So, their solution is, to only feed her 4 oz. every 3 - 4 hours. No matter what.

What I don't understand, is how am I supposed to let my daughter scream because she's hungry?!?! We went rounds on this today, and they won, because ultimately, I WILL do what's best for Paige, but I still don't understand how I'm just supposed to deal with it all. I have faith though, and we'll get through that.

They also ordered Chest X-Rays, and did a throat culture to rule out infection for sure.

We also signed up for the Formula Study today. We got our first box of Formula. It's liquid form, and ready to go. It should make our feedings quite a bit easier! I'm excited to try it, and I'm praying that it works, and that we got the good stuff! They also sent me home with stool sample collection kits...they come with the study...<img src="i/expressions/face-icon-small-sad.gif" border="0"> I dislike poo very much lol.

Anyways, Paige's weight is up to 9lbs 14oz and she's 22in long! They also re-scheduled Matt's Sweat Test, they don't think it's a necessity right now, and they want to wait until our next visit. Sometimes I think they forget how hard it is to drag your infant AND your preschooler, on a 3 hour drive! lol

Well, before I go, I would like to know if there are any other kids or adults out there with the same mutations? I'd like to get an idea of how this will effect her. I didn't get much of a chance to ask any questions, because setting us up for the Formula Study took sooo long, and was sooo much paperwork.

Thanks everyone!
 
C

ctalbott0609

New member
Well, we went to Dr. Black's office today, instead of Friday. I called yesterday because she had began coughing, and wheezing more, as well as a few other things, and they asked us to be up there at 9:30 AM. We also took my son because Dr. Black had wanted him to get a sweat test done.

They got Paige's Genetics Test Results back, and her first mutation is DF508 and her second is G542X. As everyone knows, DF508 is super common, so we're safe there! G542X is not AS common, but it is common, and they said that a ton of research is being focused on that right now, and that they expect HUGE improvements in the next 10 years.

They think that her cough, wheezing, blowouts, and spit-up are all from over feeding. They don't think the Enzymes are getting a chance to work well enough, so they adjusted almost EVERYTHING.

They cut her dose of Zantac down to .75 ml 4 times a day, and they want me to DECREASE her feedings. They said she's gaining 41g a day, and they want her only gaining 29g. So, their solution is, to only feed her 4 oz. every 3 - 4 hours. No matter what.

What I don't understand, is how am I supposed to let my daughter scream because she's hungry?!?! We went rounds on this today, and they won, because ultimately, I WILL do what's best for Paige, but I still don't understand how I'm just supposed to deal with it all. I have faith though, and we'll get through that.

They also ordered Chest X-Rays, and did a throat culture to rule out infection for sure.

We also signed up for the Formula Study today. We got our first box of Formula. It's liquid form, and ready to go. It should make our feedings quite a bit easier! I'm excited to try it, and I'm praying that it works, and that we got the good stuff! They also sent me home with stool sample collection kits...they come with the study...<img src="i/expressions/face-icon-small-sad.gif" border="0"> I dislike poo very much lol.

Anyways, Paige's weight is up to 9lbs 14oz and she's 22in long! They also re-scheduled Matt's Sweat Test, they don't think it's a necessity right now, and they want to wait until our next visit. Sometimes I think they forget how hard it is to drag your infant AND your preschooler, on a 3 hour drive! lol

Well, before I go, I would like to know if there are any other kids or adults out there with the same mutations? I'd like to get an idea of how this will effect her. I didn't get much of a chance to ask any questions, because setting us up for the Formula Study took sooo long, and was sooo much paperwork.

Thanks everyone!
 
C

ctalbott0609

New member
Well, we went to Dr. Black's office today, instead of Friday. I called yesterday because she had began coughing, and wheezing more, as well as a few other things, and they asked us to be up there at 9:30 AM. We also took my son because Dr. Black had wanted him to get a sweat test done.
<br />
<br />They got Paige's Genetics Test Results back, and her first mutation is DF508 and her second is G542X. As everyone knows, DF508 is super common, so we're safe there! G542X is not AS common, but it is common, and they said that a ton of research is being focused on that right now, and that they expect HUGE improvements in the next 10 years.
<br />
<br />They think that her cough, wheezing, blowouts, and spit-up are all from over feeding. They don't think the Enzymes are getting a chance to work well enough, so they adjusted almost EVERYTHING.
<br />
<br />They cut her dose of Zantac down to .75 ml 4 times a day, and they want me to DECREASE her feedings. They said she's gaining 41g a day, and they want her only gaining 29g. So, their solution is, to only feed her 4 oz. every 3 - 4 hours. No matter what.
<br />
<br />What I don't understand, is how am I supposed to let my daughter scream because she's hungry?!?! We went rounds on this today, and they won, because ultimately, I WILL do what's best for Paige, but I still don't understand how I'm just supposed to deal with it all. I have faith though, and we'll get through that.
<br />
<br />They also ordered Chest X-Rays, and did a throat culture to rule out infection for sure.
<br />
<br />We also signed up for the Formula Study today. We got our first box of Formula. It's liquid form, and ready to go. It should make our feedings quite a bit easier! I'm excited to try it, and I'm praying that it works, and that we got the good stuff! They also sent me home with stool sample collection kits...they come with the study...<img src="i/expressions/face-icon-small-sad.gif" border="0"> I dislike poo very much lol.
<br />
<br />Anyways, Paige's weight is up to 9lbs 14oz and she's 22in long! They also re-scheduled Matt's Sweat Test, they don't think it's a necessity right now, and they want to wait until our next visit. Sometimes I think they forget how hard it is to drag your infant AND your preschooler, on a 3 hour drive! lol
<br />
<br />Well, before I go, I would like to know if there are any other kids or adults out there with the same mutations? I'd like to get an idea of how this will effect her. I didn't get much of a chance to ask any questions, because setting us up for the Formula Study took sooo long, and was sooo much paperwork.
<br />
<br />Thanks everyone!
<br />
<br />
 
R

Ratatosk

Administrator
Staff member
IMO sounds a bit backwards to limit a baby, let alone a baby with cf in terms of feeding. We struggled to keep DS at the 50th percentile and I once had a doctor tell me that I shouldn't be adding cream to his bottles because he MIGHT get fat. I just ignored him.

I guess I'd go with my gut and if she's hungry feed her. She's a normal baby, just happens to have CF. What would you do if she DIDN'T have CF? Would you hold off feeding her? Eventually she's going to become more active and lose the babyfat. Babies need fat for brain development. And I guess I'd consider any extra weight a buffer in case she does get sick and lose some weight.
 
R

Ratatosk

Administrator
Staff member
IMO sounds a bit backwards to limit a baby, let alone a baby with cf in terms of feeding. We struggled to keep DS at the 50th percentile and I once had a doctor tell me that I shouldn't be adding cream to his bottles because he MIGHT get fat. I just ignored him.

I guess I'd go with my gut and if she's hungry feed her. She's a normal baby, just happens to have CF. What would you do if she DIDN'T have CF? Would you hold off feeding her? Eventually she's going to become more active and lose the babyfat. Babies need fat for brain development. And I guess I'd consider any extra weight a buffer in case she does get sick and lose some weight.
 
R

Ratatosk

Administrator
Staff member
IMO sounds a bit backwards to limit a baby, let alone a baby with cf in terms of feeding. We struggled to keep DS at the 50th percentile and I once had a doctor tell me that I shouldn't be adding cream to his bottles because he MIGHT get fat. I just ignored him.

I guess I'd go with my gut and if she's hungry feed her. She's a normal baby, just happens to have CF. What would you do if she DIDN'T have CF? Would you hold off feeding her? Eventually she's going to become more active and lose the babyfat. Babies need fat for brain development. And I guess I'd consider any extra weight a buffer in case she does get sick and lose some weight.
 
R

Ratatosk

Administrator
Staff member
IMO sounds a bit backwards to limit a baby, let alone a baby with cf in terms of feeding. We struggled to keep DS at the 50th percentile and I once had a doctor tell me that I shouldn't be adding cream to his bottles because he MIGHT get fat. I just ignored him.

I guess I'd go with my gut and if she's hungry feed her. She's a normal baby, just happens to have CF. What would you do if she DIDN'T have CF? Would you hold off feeding her? Eventually she's going to become more active and lose the babyfat. Babies need fat for brain development. And I guess I'd consider any extra weight a buffer in case she does get sick and lose some weight.
 
R

Ratatosk

Administrator
Staff member
IMO sounds a bit backwards to limit a baby, let alone a baby with cf in terms of feeding. We struggled to keep DS at the 50th percentile and I once had a doctor tell me that I shouldn't be adding cream to his bottles because he MIGHT get fat. I just ignored him.
<br />
<br />I guess I'd go with my gut and if she's hungry feed her. She's a normal baby, just happens to have CF. What would you do if she DIDN'T have CF? Would you hold off feeding her? Eventually she's going to become more active and lose the babyfat. Babies need fat for brain development. And I guess I'd consider any extra weight a buffer in case she does get sick and lose some weight.
 
L

Littlemiss

New member
Hi Chelsea,

Glad to hear you might be getting things sorted out with Paige, I hope this new regimen works for you.

In terms of gene mutations, don't have the same ones, but to my knowledge (anyone correct me if I'm wrong!) there isn't really any conclusive research that links gene mutations to outcomes with CF. There are some people who are sick and some people who are very well with all mutations. How well she does has much more to do with how well she is managed IMO.

I have two brothers with CF, and we all have varying levels of health, I know that my older brother was very unwell as an infant, but he is doing well now. I have developed CFRD (CF diabetes) but my brother hasn't. We all have the same mutations of course.

There is alot of interest around gene mutations at the moment, espeically with new treatments coming out for specific mutations.

I guess all I'm saying is don't get too caught up on it, just do everything you can to keep her healthy, and do exactly as you did and jump on top of any change in symptoms straight away so she stays well.

AJ

PS your kids are beautiful BTW <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Littlemiss

New member
Hi Chelsea,

Glad to hear you might be getting things sorted out with Paige, I hope this new regimen works for you.

In terms of gene mutations, don't have the same ones, but to my knowledge (anyone correct me if I'm wrong!) there isn't really any conclusive research that links gene mutations to outcomes with CF. There are some people who are sick and some people who are very well with all mutations. How well she does has much more to do with how well she is managed IMO.

I have two brothers with CF, and we all have varying levels of health, I know that my older brother was very unwell as an infant, but he is doing well now. I have developed CFRD (CF diabetes) but my brother hasn't. We all have the same mutations of course.

There is alot of interest around gene mutations at the moment, espeically with new treatments coming out for specific mutations.

I guess all I'm saying is don't get too caught up on it, just do everything you can to keep her healthy, and do exactly as you did and jump on top of any change in symptoms straight away so she stays well.

AJ

PS your kids are beautiful BTW <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Littlemiss

New member
Hi Chelsea,

Glad to hear you might be getting things sorted out with Paige, I hope this new regimen works for you.

In terms of gene mutations, don't have the same ones, but to my knowledge (anyone correct me if I'm wrong!) there isn't really any conclusive research that links gene mutations to outcomes with CF. There are some people who are sick and some people who are very well with all mutations. How well she does has much more to do with how well she is managed IMO.

I have two brothers with CF, and we all have varying levels of health, I know that my older brother was very unwell as an infant, but he is doing well now. I have developed CFRD (CF diabetes) but my brother hasn't. We all have the same mutations of course.

There is alot of interest around gene mutations at the moment, espeically with new treatments coming out for specific mutations.

I guess all I'm saying is don't get too caught up on it, just do everything you can to keep her healthy, and do exactly as you did and jump on top of any change in symptoms straight away so she stays well.

AJ

PS your kids are beautiful BTW <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Littlemiss

New member
Hi Chelsea,

Glad to hear you might be getting things sorted out with Paige, I hope this new regimen works for you.

In terms of gene mutations, don't have the same ones, but to my knowledge (anyone correct me if I'm wrong!) there isn't really any conclusive research that links gene mutations to outcomes with CF. There are some people who are sick and some people who are very well with all mutations. How well she does has much more to do with how well she is managed IMO.

I have two brothers with CF, and we all have varying levels of health, I know that my older brother was very unwell as an infant, but he is doing well now. I have developed CFRD (CF diabetes) but my brother hasn't. We all have the same mutations of course.

There is alot of interest around gene mutations at the moment, espeically with new treatments coming out for specific mutations.

I guess all I'm saying is don't get too caught up on it, just do everything you can to keep her healthy, and do exactly as you did and jump on top of any change in symptoms straight away so she stays well.

AJ

PS your kids are beautiful BTW <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Littlemiss

New member
Hi Chelsea,
<br />
<br />Glad to hear you might be getting things sorted out with Paige, I hope this new regimen works for you.
<br />
<br />In terms of gene mutations, don't have the same ones, but to my knowledge (anyone correct me if I'm wrong!) there isn't really any conclusive research that links gene mutations to outcomes with CF. There are some people who are sick and some people who are very well with all mutations. How well she does has much more to do with how well she is managed IMO.
<br />
<br />I have two brothers with CF, and we all have varying levels of health, I know that my older brother was very unwell as an infant, but he is doing well now. I have developed CFRD (CF diabetes) but my brother hasn't. We all have the same mutations of course.
<br />
<br />There is alot of interest around gene mutations at the moment, espeically with new treatments coming out for specific mutations.
<br />
<br />I guess all I'm saying is don't get too caught up on it, just do everything you can to keep her healthy, and do exactly as you did and jump on top of any change in symptoms straight away so she stays well.
<br />
<br />AJ
<br />
<br />PS your kids are beautiful BTW <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jbrandonAW

New member
What are your thoughts on breastfeeding? Breastfed babies only take in around 3 oz at each feeding. I know she is a month old BUT it is possible to relactate and be able to feed her breastmilk. I too agree that an infant should never be told they can't eat -especially a CF infant. Are these cf docs that are telling you that?

At the same time 4 oz sounds right for a month old baby to be eating. I bet she is screaming for for tummy pain and not b/c she is hungry SO it should even out after a few days IF its going to work.
 
J

jbrandonAW

New member
What are your thoughts on breastfeeding? Breastfed babies only take in around 3 oz at each feeding. I know she is a month old BUT it is possible to relactate and be able to feed her breastmilk. I too agree that an infant should never be told they can't eat -especially a CF infant. Are these cf docs that are telling you that?

At the same time 4 oz sounds right for a month old baby to be eating. I bet she is screaming for for tummy pain and not b/c she is hungry SO it should even out after a few days IF its going to work.
 
J

jbrandonAW

New member
What are your thoughts on breastfeeding? Breastfed babies only take in around 3 oz at each feeding. I know she is a month old BUT it is possible to relactate and be able to feed her breastmilk. I too agree that an infant should never be told they can't eat -especially a CF infant. Are these cf docs that are telling you that?

At the same time 4 oz sounds right for a month old baby to be eating. I bet she is screaming for for tummy pain and not b/c she is hungry SO it should even out after a few days IF its going to work.
 
J

jbrandonAW

New member
What are your thoughts on breastfeeding? Breastfed babies only take in around 3 oz at each feeding. I know she is a month old BUT it is possible to relactate and be able to feed her breastmilk. I too agree that an infant should never be told they can't eat -especially a CF infant. Are these cf docs that are telling you that?

At the same time 4 oz sounds right for a month old baby to be eating. I bet she is screaming for for tummy pain and not b/c she is hungry SO it should even out after a few days IF its going to work.
 
J

jbrandonAW

New member
What are your thoughts on breastfeeding? Breastfed babies only take in around 3 oz at each feeding. I know she is a month old BUT it is possible to relactate and be able to feed her breastmilk. I too agree that an infant should never be told they can't eat -especially a CF infant. Are these cf docs that are telling you that?
<br />
<br />At the same time 4 oz sounds right for a month old baby to be eating. I bet she is screaming for for tummy pain and not b/c she is hungry SO it should even out after a few days IF its going to work.
 
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