Weight and CF

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sdavis227

New member
Parker started off at only 6lbs 7 oz when he was born (docs said he would be at least 8lbs)

Since then he has gone down into the 5th% a few different times. When he was 5 months, he got his g-tube. We haven't had to use it in quite awhile - last time was in winter months when he got sick a few times.

Last clinic was good, he was up to the 32% I believe. Since then, I haven't really worried too much about it except making sure that he eats fatty foods at every meal.

We had him on cream and milk (cream is 60cals per oz!) up until about a month ago.

He's doing so well with everything - no cough and looks like a normal baby (except the button). Sometimes it's hard to remember that he has CF. I suppose all the other things; vest, meds, vitamins - are all just second nature now - I find myself thinking twice when I see another parent just giving their children food without enzymes <img src="i/expressions/face-icon-small-smile.gif" border="0">

To answer the question about the clinic watching weight - oh YES. They sure did. We had to travel an hour every week for awhile just to get him weighed. We had our struggles with the clinic at that time! They tried their hardest (or so it seemed) to get me to stop BFing. Finally I had to stop after the surgery for the G-tube.

All in all, DS is around 22-23 lbs at 15 months old. We have a nurse that comes every week to check his weight and O2 stats and such, but I don't think the scale is quite accurate.
 
S

sdavis227

New member
Parker started off at only 6lbs 7 oz when he was born (docs said he would be at least 8lbs)

Since then he has gone down into the 5th% a few different times. When he was 5 months, he got his g-tube. We haven't had to use it in quite awhile - last time was in winter months when he got sick a few times.

Last clinic was good, he was up to the 32% I believe. Since then, I haven't really worried too much about it except making sure that he eats fatty foods at every meal.

We had him on cream and milk (cream is 60cals per oz!) up until about a month ago.

He's doing so well with everything - no cough and looks like a normal baby (except the button). Sometimes it's hard to remember that he has CF. I suppose all the other things; vest, meds, vitamins - are all just second nature now - I find myself thinking twice when I see another parent just giving their children food without enzymes <img src="i/expressions/face-icon-small-smile.gif" border="0">

To answer the question about the clinic watching weight - oh YES. They sure did. We had to travel an hour every week for awhile just to get him weighed. We had our struggles with the clinic at that time! They tried their hardest (or so it seemed) to get me to stop BFing. Finally I had to stop after the surgery for the G-tube.

All in all, DS is around 22-23 lbs at 15 months old. We have a nurse that comes every week to check his weight and O2 stats and such, but I don't think the scale is quite accurate.
 
S

sdavis227

New member
Parker started off at only 6lbs 7 oz when he was born (docs said he would be at least 8lbs)

Since then he has gone down into the 5th% a few different times. When he was 5 months, he got his g-tube. We haven't had to use it in quite awhile - last time was in winter months when he got sick a few times.

Last clinic was good, he was up to the 32% I believe. Since then, I haven't really worried too much about it except making sure that he eats fatty foods at every meal.

We had him on cream and milk (cream is 60cals per oz!) up until about a month ago.

He's doing so well with everything - no cough and looks like a normal baby (except the button). Sometimes it's hard to remember that he has CF. I suppose all the other things; vest, meds, vitamins - are all just second nature now - I find myself thinking twice when I see another parent just giving their children food without enzymes <img src="i/expressions/face-icon-small-smile.gif" border="0">

To answer the question about the clinic watching weight - oh YES. They sure did. We had to travel an hour every week for awhile just to get him weighed. We had our struggles with the clinic at that time! They tried their hardest (or so it seemed) to get me to stop BFing. Finally I had to stop after the surgery for the G-tube.

All in all, DS is around 22-23 lbs at 15 months old. We have a nurse that comes every week to check his weight and O2 stats and such, but I don't think the scale is quite accurate.
 
S

sdavis227

New member
Parker started off at only 6lbs 7 oz when he was born (docs said he would be at least 8lbs)

Since then he has gone down into the 5th% a few different times. When he was 5 months, he got his g-tube. We haven't had to use it in quite awhile - last time was in winter months when he got sick a few times.

Last clinic was good, he was up to the 32% I believe. Since then, I haven't really worried too much about it except making sure that he eats fatty foods at every meal.

We had him on cream and milk (cream is 60cals per oz!) up until about a month ago.

He's doing so well with everything - no cough and looks like a normal baby (except the button). Sometimes it's hard to remember that he has CF. I suppose all the other things; vest, meds, vitamins - are all just second nature now - I find myself thinking twice when I see another parent just giving their children food without enzymes <img src="i/expressions/face-icon-small-smile.gif" border="0">

To answer the question about the clinic watching weight - oh YES. They sure did. We had to travel an hour every week for awhile just to get him weighed. We had our struggles with the clinic at that time! They tried their hardest (or so it seemed) to get me to stop BFing. Finally I had to stop after the surgery for the G-tube.

All in all, DS is around 22-23 lbs at 15 months old. We have a nurse that comes every week to check his weight and O2 stats and such, but I don't think the scale is quite accurate.
 
S

sdavis227

New member
Parker started off at only 6lbs 7 oz when he was born (docs said he would be at least 8lbs)
<br />
<br />Since then he has gone down into the 5th% a few different times. When he was 5 months, he got his g-tube. We haven't had to use it in quite awhile - last time was in winter months when he got sick a few times.
<br />
<br />Last clinic was good, he was up to the 32% I believe. Since then, I haven't really worried too much about it except making sure that he eats fatty foods at every meal.
<br />
<br />We had him on cream and milk (cream is 60cals per oz!) up until about a month ago.
<br />
<br />He's doing so well with everything - no cough and looks like a normal baby (except the button). Sometimes it's hard to remember that he has CF. I suppose all the other things; vest, meds, vitamins - are all just second nature now - I find myself thinking twice when I see another parent just giving their children food without enzymes <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />To answer the question about the clinic watching weight - oh YES. They sure did. We had to travel an hour every week for awhile just to get him weighed. We had our struggles with the clinic at that time! They tried their hardest (or so it seemed) to get me to stop BFing. Finally I had to stop after the surgery for the G-tube.
<br />
<br />All in all, DS is around 22-23 lbs at 15 months old. We have a nurse that comes every week to check his weight and O2 stats and such, but I don't think the scale is quite accurate.
 
C

ConnorsMom

New member
Connor was always in the 25% and his team at Children's Mercy in KC MO always felt as long as he continued to gain, he was good. As soon as we moved to VA the new team zeroed in on Connor's weight. Insisting that the research shows a correlation between weight and lung function. They started right in on us about a g-tube. I resisted for over a year, we tired all kinds of supplements (anybody been on Marinol? It worked at first, but made Connor feel "weird"). Nothing worked- and I do fear I gave the poor kid a complex abuot food, always trying to shove it down his throat. Since he's had the g-tube, not much has changed. Every time he has an allegy attack or a virus, he loses weight. We had him up to 78 lbs then he dropped down to 75 and stayed there till we got him on antibiotics, now he's back up to 76.5. We have yet to see the increased health benefits from weight gain (he waas 66 lbs when we left the hospital with the Mik-Key button). I've really relaxed on the food issue (and got him in counseling) as long as he eats I'm happy, we do the formula as prescribed and we'll just wait and see. His Dad is 6'4" and 170 lbs, when I was young I was a bean pole struggling to weigh 100lbs. (don't have the problem now however, lol). I think genetics, metabolism as well as the CF symptoms all play a role. Connor is always on the move, never slows down.
 
C

ConnorsMom

New member
Connor was always in the 25% and his team at Children's Mercy in KC MO always felt as long as he continued to gain, he was good. As soon as we moved to VA the new team zeroed in on Connor's weight. Insisting that the research shows a correlation between weight and lung function. They started right in on us about a g-tube. I resisted for over a year, we tired all kinds of supplements (anybody been on Marinol? It worked at first, but made Connor feel "weird"). Nothing worked- and I do fear I gave the poor kid a complex abuot food, always trying to shove it down his throat. Since he's had the g-tube, not much has changed. Every time he has an allegy attack or a virus, he loses weight. We had him up to 78 lbs then he dropped down to 75 and stayed there till we got him on antibiotics, now he's back up to 76.5. We have yet to see the increased health benefits from weight gain (he waas 66 lbs when we left the hospital with the Mik-Key button). I've really relaxed on the food issue (and got him in counseling) as long as he eats I'm happy, we do the formula as prescribed and we'll just wait and see. His Dad is 6'4" and 170 lbs, when I was young I was a bean pole struggling to weigh 100lbs. (don't have the problem now however, lol). I think genetics, metabolism as well as the CF symptoms all play a role. Connor is always on the move, never slows down.
 
C

ConnorsMom

New member
Connor was always in the 25% and his team at Children's Mercy in KC MO always felt as long as he continued to gain, he was good. As soon as we moved to VA the new team zeroed in on Connor's weight. Insisting that the research shows a correlation between weight and lung function. They started right in on us about a g-tube. I resisted for over a year, we tired all kinds of supplements (anybody been on Marinol? It worked at first, but made Connor feel "weird"). Nothing worked- and I do fear I gave the poor kid a complex abuot food, always trying to shove it down his throat. Since he's had the g-tube, not much has changed. Every time he has an allegy attack or a virus, he loses weight. We had him up to 78 lbs then he dropped down to 75 and stayed there till we got him on antibiotics, now he's back up to 76.5. We have yet to see the increased health benefits from weight gain (he waas 66 lbs when we left the hospital with the Mik-Key button). I've really relaxed on the food issue (and got him in counseling) as long as he eats I'm happy, we do the formula as prescribed and we'll just wait and see. His Dad is 6'4" and 170 lbs, when I was young I was a bean pole struggling to weigh 100lbs. (don't have the problem now however, lol). I think genetics, metabolism as well as the CF symptoms all play a role. Connor is always on the move, never slows down.
 
C

ConnorsMom

New member
Connor was always in the 25% and his team at Children's Mercy in KC MO always felt as long as he continued to gain, he was good. As soon as we moved to VA the new team zeroed in on Connor's weight. Insisting that the research shows a correlation between weight and lung function. They started right in on us about a g-tube. I resisted for over a year, we tired all kinds of supplements (anybody been on Marinol? It worked at first, but made Connor feel "weird"). Nothing worked- and I do fear I gave the poor kid a complex abuot food, always trying to shove it down his throat. Since he's had the g-tube, not much has changed. Every time he has an allegy attack or a virus, he loses weight. We had him up to 78 lbs then he dropped down to 75 and stayed there till we got him on antibiotics, now he's back up to 76.5. We have yet to see the increased health benefits from weight gain (he waas 66 lbs when we left the hospital with the Mik-Key button). I've really relaxed on the food issue (and got him in counseling) as long as he eats I'm happy, we do the formula as prescribed and we'll just wait and see. His Dad is 6'4" and 170 lbs, when I was young I was a bean pole struggling to weigh 100lbs. (don't have the problem now however, lol). I think genetics, metabolism as well as the CF symptoms all play a role. Connor is always on the move, never slows down.
 
C

ConnorsMom

New member
Connor was always in the 25% and his team at Children's Mercy in KC MO always felt as long as he continued to gain, he was good. As soon as we moved to VA the new team zeroed in on Connor's weight. Insisting that the research shows a correlation between weight and lung function. They started right in on us about a g-tube. I resisted for over a year, we tired all kinds of supplements (anybody been on Marinol? It worked at first, but made Connor feel "weird"). Nothing worked- and I do fear I gave the poor kid a complex abuot food, always trying to shove it down his throat. Since he's had the g-tube, not much has changed. Every time he has an allegy attack or a virus, he loses weight. We had him up to 78 lbs then he dropped down to 75 and stayed there till we got him on antibiotics, now he's back up to 76.5. We have yet to see the increased health benefits from weight gain (he waas 66 lbs when we left the hospital with the Mik-Key button). I've really relaxed on the food issue (and got him in counseling) as long as he eats I'm happy, we do the formula as prescribed and we'll just wait and see. His Dad is 6'4" and 170 lbs, when I was young I was a bean pole struggling to weigh 100lbs. (don't have the problem now however, lol). I think genetics, metabolism as well as the CF symptoms all play a role. Connor is always on the move, never slows down.
<br />
 
J

JennyCoulon

New member
What kind of high calories foods do you feed your kids? I use heavy whipping cream in my 3 year old's milk and I though that we were starting to see improvement but then he got strep. We have 2 weeks to try and pack on the lbs. before the next clinic visit. Please help me with what you use to help with weight gain. Thanks
 
J

JennyCoulon

New member
What kind of high calories foods do you feed your kids? I use heavy whipping cream in my 3 year old's milk and I though that we were starting to see improvement but then he got strep. We have 2 weeks to try and pack on the lbs. before the next clinic visit. Please help me with what you use to help with weight gain. Thanks
 
J

JennyCoulon

New member
What kind of high calories foods do you feed your kids? I use heavy whipping cream in my 3 year old's milk and I though that we were starting to see improvement but then he got strep. We have 2 weeks to try and pack on the lbs. before the next clinic visit. Please help me with what you use to help with weight gain. Thanks
 
J

JennyCoulon

New member
What kind of high calories foods do you feed your kids? I use heavy whipping cream in my 3 year old's milk and I though that we were starting to see improvement but then he got strep. We have 2 weeks to try and pack on the lbs. before the next clinic visit. Please help me with what you use to help with weight gain. Thanks
 
J

JennyCoulon

New member
What kind of high calories foods do you feed your kids? I use heavy whipping cream in my 3 year old's milk and I though that we were starting to see improvement but then he got strep. We have 2 weeks to try and pack on the lbs. before the next clinic visit. Please help me with what you use to help with weight gain. Thanks
 
M

mneville

Guest
My son Aidan was born full term at only 5 lbs 6 ounces. He lost weight until diagnosed at 8 days old. He is Double Delta so he is pancreatic insufficient.

But he is now 3 (will be 4 in September) and weighs 49.9 pounds!! He was just at CF clinic today. He is actually overweight but the clinic is fine with that.He is VERY active so I know the weight will even off at some point.

Aidan eats pizza, pork roll, waffles with extra butter, lots of salty snacks, PB J, Wendy's chicken nuggets, ice cream, Carnation with all his milk but I cut him back to 2% milk because he's so big, mac and cheese, hot dogs. When he was ages 1-2, I found it the hardest. He had sinus issues and hated to eat. I added whipping cream to everything-everything was high fat. But now that he is over weight ,I am trying to cut back on stuff.

Megan
 
M

mneville

Guest
My son Aidan was born full term at only 5 lbs 6 ounces. He lost weight until diagnosed at 8 days old. He is Double Delta so he is pancreatic insufficient.

But he is now 3 (will be 4 in September) and weighs 49.9 pounds!! He was just at CF clinic today. He is actually overweight but the clinic is fine with that.He is VERY active so I know the weight will even off at some point.

Aidan eats pizza, pork roll, waffles with extra butter, lots of salty snacks, PB J, Wendy's chicken nuggets, ice cream, Carnation with all his milk but I cut him back to 2% milk because he's so big, mac and cheese, hot dogs. When he was ages 1-2, I found it the hardest. He had sinus issues and hated to eat. I added whipping cream to everything-everything was high fat. But now that he is over weight ,I am trying to cut back on stuff.

Megan
 
M

mneville

Guest
My son Aidan was born full term at only 5 lbs 6 ounces. He lost weight until diagnosed at 8 days old. He is Double Delta so he is pancreatic insufficient.

But he is now 3 (will be 4 in September) and weighs 49.9 pounds!! He was just at CF clinic today. He is actually overweight but the clinic is fine with that.He is VERY active so I know the weight will even off at some point.

Aidan eats pizza, pork roll, waffles with extra butter, lots of salty snacks, PB J, Wendy's chicken nuggets, ice cream, Carnation with all his milk but I cut him back to 2% milk because he's so big, mac and cheese, hot dogs. When he was ages 1-2, I found it the hardest. He had sinus issues and hated to eat. I added whipping cream to everything-everything was high fat. But now that he is over weight ,I am trying to cut back on stuff.

Megan
 
M

mneville

Guest
My son Aidan was born full term at only 5 lbs 6 ounces. He lost weight until diagnosed at 8 days old. He is Double Delta so he is pancreatic insufficient.

But he is now 3 (will be 4 in September) and weighs 49.9 pounds!! He was just at CF clinic today. He is actually overweight but the clinic is fine with that.He is VERY active so I know the weight will even off at some point.

Aidan eats pizza, pork roll, waffles with extra butter, lots of salty snacks, PB J, Wendy's chicken nuggets, ice cream, Carnation with all his milk but I cut him back to 2% milk because he's so big, mac and cheese, hot dogs. When he was ages 1-2, I found it the hardest. He had sinus issues and hated to eat. I added whipping cream to everything-everything was high fat. But now that he is over weight ,I am trying to cut back on stuff.

Megan
 
M

mneville

Guest
My son Aidan was born full term at only 5 lbs 6 ounces. He lost weight until diagnosed at 8 days old. He is Double Delta so he is pancreatic insufficient.
<br />
<br />But he is now 3 (will be 4 in September) and weighs 49.9 pounds!! He was just at CF clinic today. He is actually overweight but the clinic is fine with that.He is VERY active so I know the weight will even off at some point.
<br />
<br />Aidan eats pizza, pork roll, waffles with extra butter, lots of salty snacks, PB J, Wendy's chicken nuggets, ice cream, Carnation with all his milk but I cut him back to 2% milk because he's so big, mac and cheese, hot dogs. When he was ages 1-2, I found it the hardest. He had sinus issues and hated to eat. I added whipping cream to everything-everything was high fat. But now that he is over weight ,I am trying to cut back on stuff.
<br />
<br />Megan
 
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