Our family (on moms side) are short and the girls were all petite in body weight until children &/or hysterectomies. So to say its CF for me is not all so. IMHO I wouldnt worry unless that normally good aspect of genetics interferes with extra weight gain that might be needed for the CF part. It is a good idea to have that extra weight for the "what ifs", but I also believe that if the nutrition iIS being abosrbed and tests indicate such then that is more important at the time. It might be a delicate balancing act for you when the time comes that weight is an NEED and not just a precaution. Address it the best that you can now and handles additional issues as they arise! Dont let them freak you out. You are aware of the problems that can come so just stay alert!
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Our family (on moms side) are short and the girls were all petite in body weight until children &/or hysterectomies. So to say its CF for me is not all so. IMHO I wouldnt worry unless that normally good aspect of genetics interferes with extra weight gain that might be needed for the CF part. It is a good idea to have that extra weight for the "what ifs", but I also believe that if the nutrition iIS being abosrbed and tests indicate such then that is more important at the time. It might be a delicate balancing act for you when the time comes that weight is an NEED and not just a precaution. Address it the best that you can now and handles additional issues as they arise! Dont let them freak you out. You are aware of the problems that can come so just stay alert!
blindhearted
New member
I always argued with my pediatric CF nutritionist.My mom was always small in high school, my grandmother (her mom) was also very small as long as I can remember. I told her it wasnt my CF, it was genetics. She would argue with me. Also around this time, news came out that obesity could be genetic. Well I told her, if obesity could be genetic (she agreed it can be), then being thin could be too. She told me that wasnt true, being thin is not genetic, but obesity can be. How can you have one and not the other? She wanted me to be 130+ lbs, I felt like that was too much. I had gotten to 125 and honestly had a hard time with my breathing. So, I finally told her what weight I felt comfortable at (around 115, yes 10lbs makes a difference) and what I was gonna be and whether she liked it or not. My Adult CF nutrictionist and I agreed on 115lbs (prefer no less than that, but can give or take a pound of two) as long as I could maintain it and stay healthy. She did agree that being skin can be genetic. So, I wouldnt worry about it as long as your daughter is eating properly (amount, need, etc) and maintaining her weight.
blindhearted
New member
I always argued with my pediatric CF nutritionist.My mom was always small in high school, my grandmother (her mom) was also very small as long as I can remember. I told her it wasnt my CF, it was genetics. She would argue with me. Also around this time, news came out that obesity could be genetic. Well I told her, if obesity could be genetic (she agreed it can be), then being thin could be too. She told me that wasnt true, being thin is not genetic, but obesity can be. How can you have one and not the other? She wanted me to be 130+ lbs, I felt like that was too much. I had gotten to 125 and honestly had a hard time with my breathing. So, I finally told her what weight I felt comfortable at (around 115, yes 10lbs makes a difference) and what I was gonna be and whether she liked it or not. My Adult CF nutrictionist and I agreed on 115lbs (prefer no less than that, but can give or take a pound of two) as long as I could maintain it and stay healthy. She did agree that being skin can be genetic. So, I wouldnt worry about it as long as your daughter is eating properly (amount, need, etc) and maintaining her weight.
blindhearted
New member
I always argued with my pediatric CF nutritionist.My mom was always small in high school, my grandmother (her mom) was also very small as long as I can remember. I told her it wasnt my CF, it was genetics. She would argue with me. Also around this time, news came out that obesity could be genetic. Well I told her, if obesity could be genetic (she agreed it can be), then being thin could be too. She told me that wasnt true, being thin is not genetic, but obesity can be. How can you have one and not the other? She wanted me to be 130+ lbs, I felt like that was too much. I had gotten to 125 and honestly had a hard time with my breathing. So, I finally told her what weight I felt comfortable at (around 115, yes 10lbs makes a difference) and what I was gonna be and whether she liked it or not. My Adult CF nutrictionist and I agreed on 115lbs (prefer no less than that, but can give or take a pound of two) as long as I could maintain it and stay healthy. She did agree that being skin can be genetic. So, I wouldnt worry about it as long as your daughter is eating properly (amount, need, etc) and maintaining her weight.
tell the nutritionist to get lost. genetics play a huge role in the way a child gains weight. you could stuff your child full of fat and she wont gain weight. im so sick of doctors pushing the weight issue too much with kids. im glad i was born in 'my' era. doctors would encourage parents to feed their kids more but if that didnt work they pretty much left you alone to see what would happen when you hit puberty. the only time tube feedings were suggested was if you hit rock bottom, and those were only ng tubes. i was a twig and my weight did worry the doctors a lot, but now look at me! nowdays, they are making kids drink formula, overdosing them with fat, threatening to call child services and cutting kids open to stick in g tubes! i would have been pretty peeved if doctors 'made' me do that only to achieve the same result as letting nature take its course.
tell the nutritionist to get lost. genetics play a huge role in the way a child gains weight. you could stuff your child full of fat and she wont gain weight. im so sick of doctors pushing the weight issue too much with kids. im glad i was born in 'my' era. doctors would encourage parents to feed their kids more but if that didnt work they pretty much left you alone to see what would happen when you hit puberty. the only time tube feedings were suggested was if you hit rock bottom, and those were only ng tubes. i was a twig and my weight did worry the doctors a lot, but now look at me! nowdays, they are making kids drink formula, overdosing them with fat, threatening to call child services and cutting kids open to stick in g tubes! i would have been pretty peeved if doctors 'made' me do that only to achieve the same result as letting nature take its course.
tell the nutritionist to get lost. genetics play a huge role in the way a child gains weight. you could stuff your child full of fat and she wont gain weight. im so sick of doctors pushing the weight issue too much with kids. im glad i was born in 'my' era. doctors would encourage parents to feed their kids more but if that didnt work they pretty much left you alone to see what would happen when you hit puberty. the only time tube feedings were suggested was if you hit rock bottom, and those were only ng tubes. i was a twig and my weight did worry the doctors a lot, but now look at me! nowdays, they are making kids drink formula, overdosing them with fat, threatening to call child services and cutting kids open to stick in g tubes! i would have been pretty peeved if doctors 'made' me do that only to achieve the same result as letting nature take its course.
In my opinion they take way too narrow of a viewpoint on CF weight. You all have spoken about it so well here. Family history, growth spurts and well as slow periods are all so normal in childhood, individual make-up, ect. They are not respecting you as a mother because they are not taught to do so. They have grown so accustomed to thinking they are our saviors that they simply can't see that we are the experts in our children's lives; they are simply part of OUR TEAM. Rarely, you will get a doctor who treats you with respect or sees you as a partner. Most of the time it us constantly training them in the way we would like to be treated. Sometimes it changes the doctor patient relationship, other times it is a lost cause; the ego is too large! If the latter happens get different people involved. No one says you have to employ her as your nutritionist! Boot her off your team. FIRE her. I'm sure you can come up with better ideas than PEDIASURE..JEESE is this their answer for everything. This stuff is crap.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
In my opinion they take way too narrow of a viewpoint on CF weight. You all have spoken about it so well here. Family history, growth spurts and well as slow periods are all so normal in childhood, individual make-up, ect. They are not respecting you as a mother because they are not taught to do so. They have grown so accustomed to thinking they are our saviors that they simply can't see that we are the experts in our children's lives; they are simply part of OUR TEAM. Rarely, you will get a doctor who treats you with respect or sees you as a partner. Most of the time it us constantly training them in the way we would like to be treated. Sometimes it changes the doctor patient relationship, other times it is a lost cause; the ego is too large! If the latter happens get different people involved. No one says you have to employ her as your nutritionist! Boot her off your team. FIRE her. I'm sure you can come up with better ideas than PEDIASURE..JEESE is this their answer for everything. This stuff is crap.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
In my opinion they take way too narrow of a viewpoint on CF weight. You all have spoken about it so well here. Family history, growth spurts and well as slow periods are all so normal in childhood, individual make-up, ect. They are not respecting you as a mother because they are not taught to do so. They have grown so accustomed to thinking they are our saviors that they simply can't see that we are the experts in our children's lives; they are simply part of OUR TEAM. Rarely, you will get a doctor who treats you with respect or sees you as a partner. Most of the time it us constantly training them in the way we would like to be treated. Sometimes it changes the doctor patient relationship, other times it is a lost cause; the ego is too large! If the latter happens get different people involved. No one says you have to employ her as your nutritionist! Boot her off your team. FIRE her. I'm sure you can come up with better ideas than PEDIASURE..JEESE is this their answer for everything. This stuff is crap.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
I will say this, when I experience this attitude I begin to empower myself. I begin to look at how I can change things (if they even need to be changed) on my own with other techniques or professionals who have a broader more evolved perspective on human beings. They told me my breast milk wasn't good enough for my child, they had something better. I didn't buy it, I researched my options, employed the support of my pediatrician, my midwife, my la leche league and came up with a plan to give it a shot. I was right...he just needed more time than they were willing to give him. He grew well once he caught up from being undiagnosed for so long.
You are her mom, don't give up your power. Be strong in your intuition, try other more creative solutions if you feel they are necessary (tons exist), scratch the pediasure and OTC calorie drinks (they all suck) and teach them about the strength of a mother's love and care.
Sorry, I have just felt what you are feeling and it just gets me going.
M
Mommafirst
Guest
I am so thankful to have all of you on this site. I sooo value your opinions. I talked with my husband last night and we agreed "no more pediasure." They've changed the formula recently anyway dropping the calories, fat, and sugar -- so its so expensive but gets us nothing!!! I'll mix carnation instant breakfast in her milk for vitamins and calories, and I'll find other ways to give her high calorie foods that are also healthy, teaching her good habits and helping her to gain weight.<br>
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
M
Mommafirst
Guest
I am so thankful to have all of you on this site. I sooo value your opinions. I talked with my husband last night and we agreed "no more pediasure." They've changed the formula recently anyway dropping the calories, fat, and sugar -- so its so expensive but gets us nothing!!! I'll mix carnation instant breakfast in her milk for vitamins and calories, and I'll find other ways to give her high calorie foods that are also healthy, teaching her good habits and helping her to gain weight.<br>
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
M
Mommafirst
Guest
I am so thankful to have all of you on this site. I sooo value your opinions. I talked with my husband last night and we agreed "no more pediasure." They've changed the formula recently anyway dropping the calories, fat, and sugar -- so its so expensive but gets us nothing!!! I'll mix carnation instant breakfast in her milk for vitamins and calories, and I'll find other ways to give her high calorie foods that are also healthy, teaching her good habits and helping her to gain weight.<br>
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
<br>
I'm so sad that so many of us are forced to feel that our opinions about the weight gain issue don't matter. Or that in general our opinions don't matter. Clearly we have all become quite educated on CF, so much so that my pulm actually told me I knew more than his interns. I told him he has bad interns. I agree with Jody about making this about empowering ourselves and knowing as much as we can, and requiring that our voice be heard.<br>
<br>
Thank you everyone, I read and was touched by every response on this thread.
Personally, I've never ever been able to stand the smell of pediasure, ensure... Smells too vitaminy to me. Coworker used to have some at break and I'd just want to hurl.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.
Personally, I've never ever been able to stand the smell of pediasure, ensure... Smells too vitaminy to me. Coworker used to have some at break and I'd just want to hurl.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.
Personally, I've never ever been able to stand the smell of pediasure, ensure... Smells too vitaminy to me. Coworker used to have some at break and I'd just want to hurl.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.
DS likes white milk -- not chocolate. So for supper and breakfast he either gets whole milk with some cream in it, or he gets vanilla carnation instant breakfast made with whole milk and cream. I make up a quart of it at a time and keep it in the fridge. And Sam's club now carries the vanilla powder, so it's a lot cheaper. Before the only carried chocolate.