Question About 50%

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B

babyluke

New member
We have had this same issue. I get myself so worked up before clinic, that you would think something terrible was going to happen if Luke is not a certain weight. Luke is at 43% right now, I think, so we are also still in the "yellow". Our pediatrician says (as have so many wise others who have already responded) that the most important thing is that he stays on an upward track on the chart. If he drops, then that is when we should get worried. Luke also has a feeding tube and we have had to play around with the rate at night. We have done bolbous feeds as well and he does tend to gag during those--I guess because it is going in so fast. IDK. Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
I can symapathize. This is a constant source of stress for us, too.
Angela,
Mom to Luke, 21 months old w/CF
 
B

babyluke

New member
We have had this same issue. I get myself so worked up before clinic, that you would think something terrible was going to happen if Luke is not a certain weight. Luke is at 43% right now, I think, so we are also still in the "yellow". Our pediatrician says (as have so many wise others who have already responded) that the most important thing is that he stays on an upward track on the chart. If he drops, then that is when we should get worried. Luke also has a feeding tube and we have had to play around with the rate at night. We have done bolbous feeds as well and he does tend to gag during those--I guess because it is going in so fast. IDK. Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
I can symapathize. This is a constant source of stress for us, too.
Angela,
Mom to Luke, 21 months old w/CF
 
B

babyluke

New member
We have had this same issue. I get myself so worked up before clinic, that you would think something terrible was going to happen if Luke is not a certain weight. Luke is at 43% right now, I think, so we are also still in the "yellow". Our pediatrician says (as have so many wise others who have already responded) that the most important thing is that he stays on an upward track on the chart. If he drops, then that is when we should get worried. Luke also has a feeding tube and we have had to play around with the rate at night. We have done bolbous feeds as well and he does tend to gag during those--I guess because it is going in so fast. IDK. Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
I can symapathize. This is a constant source of stress for us, too.
Angela,
Mom to Luke, 21 months old w/CF
 
B

babyluke

New member
We have had this same issue. I get myself so worked up before clinic, that you would think something terrible was going to happen if Luke is not a certain weight. Luke is at 43% right now, I think, so we are also still in the "yellow". Our pediatrician says (as have so many wise others who have already responded) that the most important thing is that he stays on an upward track on the chart. If he drops, then that is when we should get worried. Luke also has a feeding tube and we have had to play around with the rate at night. We have done bolbous feeds as well and he does tend to gag during those--I guess because it is going in so fast. IDK. Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
I can symapathize. This is a constant source of stress for us, too.
Angela,
Mom to Luke, 21 months old w/CF
 
B

babyluke

New member
We have had this same issue. I get myself so worked up before clinic, that you would think something terrible was going to happen if Luke is not a certain weight. Luke is at 43% right now, I think, so we are also still in the "yellow". Our pediatrician says (as have so many wise others who have already responded) that the most important thing is that he stays on an upward track on the chart. If he drops, then that is when we should get worried. Luke also has a feeding tube and we have had to play around with the rate at night. We have done bolbous feeds as well and he does tend to gag during those--I guess because it is going in so fast. IDK. Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
<br />I can symapathize. This is a constant source of stress for us, too.
<br />Angela,
<br />Mom to Luke, 21 months old w/CF
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babyluke</b></i>

Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.

</end quote></div>


IF you are using Axcan's enzymes they use to offer Scandical for free like they do the shakes & ADEK.....just a thought
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babyluke</b></i>

Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.

</end quote></div>


IF you are using Axcan's enzymes they use to offer Scandical for free like they do the shakes & ADEK.....just a thought
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babyluke</b></i>

Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.

</end quote></div>


IF you are using Axcan's enzymes they use to offer Scandical for free like they do the shakes & ADEK.....just a thought
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babyluke</b></i>

Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.

</end quote>


IF you are using Axcan's enzymes they use to offer Scandical for free like they do the shakes & ADEK.....just a thought
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>babyluke</b></i>
<br />
<br />Have you tried any of the calorie adding powder? We are using Scandical right now. It mixes pretty well into most foods and it adds calories and some fat, too. You have to order it through Axcan and I think it is about $7 a canister.
<br />
<br /></end quote>
<br />
<br />
<br />IF you are using Axcan's enzymes they use to offer Scandical for free like they do the shakes & ADEK.....just a thought
<br />
 
V

valigirl21

Guest
Are you guys kidding!!! 43%! Just under 50%! I wish! Noah is barely at 5% and our docs are fine w/ that b/c its an increase from being <2%. Tom is right, if she maintains her BMI over time, then that's good. Even our idiot GI doc is ok with Noah maintaining his BMI even if htere isn't any kind of gain.

Hugs to all of you, and Gracie is so gosh darn cute!!
 
V

valigirl21

Guest
Are you guys kidding!!! 43%! Just under 50%! I wish! Noah is barely at 5% and our docs are fine w/ that b/c its an increase from being <2%. Tom is right, if she maintains her BMI over time, then that's good. Even our idiot GI doc is ok with Noah maintaining his BMI even if htere isn't any kind of gain.

Hugs to all of you, and Gracie is so gosh darn cute!!
 
V

valigirl21

Guest
Are you guys kidding!!! 43%! Just under 50%! I wish! Noah is barely at 5% and our docs are fine w/ that b/c its an increase from being <2%. Tom is right, if she maintains her BMI over time, then that's good. Even our idiot GI doc is ok with Noah maintaining his BMI even if htere isn't any kind of gain.

Hugs to all of you, and Gracie is so gosh darn cute!!
 
V

valigirl21

Guest
Are you guys kidding!!! 43%! Just under 50%! I wish! Noah is barely at 5% and our docs are fine w/ that b/c its an increase from being <2%. Tom is right, if she maintains her BMI over time, then that's good. Even our idiot GI doc is ok with Noah maintaining his BMI even if htere isn't any kind of gain.

Hugs to all of you, and Gracie is so gosh darn cute!!
 
V

valigirl21

Guest
Are you guys kidding!!! 43%! Just under 50%! I wish! Noah is barely at 5% and our docs are fine w/ that b/c its an increase from being <2%. Tom is right, if she maintains her BMI over time, then that's good. Even our idiot GI doc is ok with Noah maintaining his BMI even if htere isn't any kind of gain.
<br />
<br />Hugs to all of you, and Gracie is so gosh darn cute!!
 
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