Underweight?

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ByGrace

Guest
We're still going through the beginning stages of treatment for my son and his first appointment at the CF center is next week.  However, that's a long time to wait to ask my questions; maybe some of you could shed some light on this subject.  <br><br>I've always noticed that my son was skinny, but his father and I just assumed it was genetic (my husband has always been thin).  But how do you know if they are underweight or just skinny?  I went back to his medical records and plotted his BMI for each year since 2 years old until now, 8 years old.  From 2-3 he was in the 50th percentile.  Then at 3 1/2 he dropped down to the 4th percentile.  From 4-7 he went back up to around 15th %, now, at 8, he's back down to the 3rd.  He's never been "sickly", only chronic constipation (which if I'm remembering correctly, started around the time of that initial drop in BMI).  He doesn't have a huge appetite, but he eats well and is active.  What do you think?  Could he just be a skinny kid or is this something to be concerned about?  <br>
 
B

ByGrace

Guest
We're still going through the beginning stages of treatment for my son and his first appointment at the CF center is next week. However, that's a long time to wait to ask my questions; maybe some of you could shed some light on this subject. <br><br>I've always noticed that my son was skinny, but his father and I just assumed it was genetic (my husband has always been thin). But how do you know if they are underweight or just skinny? I went back to his medical records and plotted his BMI for each year since 2 years old until now, 8 years old. From 2-3 he was in the 50th percentile. Then at 3 1/2 he dropped down to the 4th percentile. From 4-7 he went back up to around 15th %, now, at 8, he's back down to the 3rd. He's never been "sickly", only chronic constipation (which if I'm remembering correctly, started around the time of that initial drop in BMI). He doesn't have a huge appetite, but he eats well and is active. What do you think? Could he just be a skinny kid or is this something to be concerned about? <br>
 
B

ByGrace

Guest
We're still going through the beginning stages of treatment for my son and his first appointment at the CF center is next week. However, that's a long time to wait to ask my questions; maybe some of you could shed some light on this subject. <br><br>I've always noticed that my son was skinny, but his father and I just assumed it was genetic (my husband has always been thin). But how do you know if they are underweight or just skinny? I went back to his medical records and plotted his BMI for each year since 2 years old until now, 8 years old. From 2-3 he was in the 50th percentile. Then at 3 1/2 he dropped down to the 4th percentile. From 4-7 he went back up to around 15th %, now, at 8, he's back down to the 3rd. He's never been "sickly", only chronic constipation (which if I'm remembering correctly, started around the time of that initial drop in BMI). He doesn't have a huge appetite, but he eats well and is active. What do you think? Could he just be a skinny kid or is this something to be concerned about? <br>
 
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sdelorenzo

Guest
It is a hard to concept to grasp. The fact is it doesn't matter what is causing someone with CF to be skinny. Research shows those with CF whose bmi is above 50% do better and have a higher life expectancy. Many CF centers have a goal of having all of their CFers above 50% bmi even if they have to get there by artificial means (feeding tube). Both of my kids at are between 50-60% bmi. My daughter constantly struggled from birth with her weight. She was usually around 20% bmi. She got a feeding tube five years ago and has done great with her weight gain since. My son has never really had problems with his weight.
<br>
<br>My husband and I were skinny kids. Both of other children who do not have CF are around 5% bmi. Those facts just make it harder for my two kids with CF to gain the weight they need to.
<br>
<br>I am not sure how those with non-classic CF like your son have the same need to be above 50% bmi.
<br>
<br>Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
S

sdelorenzo

Guest
It is a hard to concept to grasp. The fact is it doesn't matter what is causing someone with CF to be skinny. Research shows those with CF whose bmi is above 50% do better and have a higher life expectancy. Many CF centers have a goal of having all of their CFers above 50% bmi even if they have to get there by artificial means (feeding tube). Both of my kids at are between 50-60% bmi. My daughter constantly struggled from birth with her weight. She was usually around 20% bmi. She got a feeding tube five years ago and has done great with her weight gain since. My son has never really had problems with his weight.
<br>
<br>My husband and I were skinny kids. Both of other children who do not have CF are around 5% bmi. Those facts just make it harder for my two kids with CF to gain the weight they need to.
<br>
<br>I am not sure how those with non-classic CF like your son have the same need to be above 50% bmi.
<br>
<br>Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
S

sdelorenzo

Guest
It is a hard to concept to grasp. The fact is it doesn't matter what is causing someone with CF to be skinny. Research shows those with CF whose bmi is above 50% do better and have a higher life expectancy. Many CF centers have a goal of having all of their CFers above 50% bmi even if they have to get there by artificial means (feeding tube). Both of my kids at are between 50-60% bmi. My daughter constantly struggled from birth with her weight. She was usually around 20% bmi. She got a feeding tube five years ago and has done great with her weight gain since. My son has never really had problems with his weight.
<br>
<br>My husband and I were skinny kids. Both of other children who do not have CF are around 5% bmi. Those facts just make it harder for my two kids with CF to gain the weight they need to.
<br>
<br>I am not sure how those with non-classic CF like your son have the same need to be above 50% bmi.
<br>
<br>Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 2 and Paige, 1 both without CF
 
M

Mistyjo

New member
My daughter's BMi is currently at 3%. I'm hoping this changes with the enzymes. Has your son had fecal elestase test? Maybe he isn't absorbing everything he needs to.
 
M

Mistyjo

New member
My daughter's BMi is currently at 3%. I'm hoping this changes with the enzymes. Has your son had fecal elestase test? Maybe he isn't absorbing everything he needs to.
 
M

Mistyjo

New member
My daughter's BMi is currently at 3%. I'm hoping this changes with the enzymes. Has your son had fecal elestase test? Maybe he isn't absorbing everything he needs to.
 
T

tammykrumrey

Guest
I agree that it is important for the kids to be closer to the 50th%. It has been shown that they just do better. Our clinic really pushes that. My older daughter, Kayla, has stayed pretty much on track (after her dx at 14 mths and starting enzymes). She is 13 and right in the 50%.

My younger daughter, Hannah, just turned 12. She used to always be right around the 40-50%, but she has been falling behind over the past three years. So much so, that she is now at the 3%, on a good day!!! Her height is not keeping up at all either. Starting to get very worried. At her last appt, I asked if we could try different enzymes, to which her dr. agreed to try. It has been a little over a month, and still not seeing any changes. I am afraid that we may have to make more drastic measures <img src="i/expressions/face-icon-small-sad.gif" border="0"> She is so tired of being little. All her friends are so much bigger than her, can shop at 'cool' stores, where 'cool' clothes...and she can still wear a 6X/7. And people, even her own friends, treat her like she is in 2 or 3rd grade, not 6th grade. Uggghhhh....so frustrating!!

I so feel your worry. We have been so lucky with the weight issues with my girls until the past few years <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not liking it!
 
T

tammykrumrey

Guest
I agree that it is important for the kids to be closer to the 50th%. It has been shown that they just do better. Our clinic really pushes that. My older daughter, Kayla, has stayed pretty much on track (after her dx at 14 mths and starting enzymes). She is 13 and right in the 50%.

My younger daughter, Hannah, just turned 12. She used to always be right around the 40-50%, but she has been falling behind over the past three years. So much so, that she is now at the 3%, on a good day!!! Her height is not keeping up at all either. Starting to get very worried. At her last appt, I asked if we could try different enzymes, to which her dr. agreed to try. It has been a little over a month, and still not seeing any changes. I am afraid that we may have to make more drastic measures <img src="i/expressions/face-icon-small-sad.gif" border="0"> She is so tired of being little. All her friends are so much bigger than her, can shop at 'cool' stores, where 'cool' clothes...and she can still wear a 6X/7. And people, even her own friends, treat her like she is in 2 or 3rd grade, not 6th grade. Uggghhhh....so frustrating!!

I so feel your worry. We have been so lucky with the weight issues with my girls until the past few years <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not liking it!
 
T

tammykrumrey

Guest
I agree that it is important for the kids to be closer to the 50th%. It has been shown that they just do better. Our clinic really pushes that. My older daughter, Kayla, has stayed pretty much on track (after her dx at 14 mths and starting enzymes). She is 13 and right in the 50%.
<br />
<br />My younger daughter, Hannah, just turned 12. She used to always be right around the 40-50%, but she has been falling behind over the past three years. So much so, that she is now at the 3%, on a good day!!! Her height is not keeping up at all either. Starting to get very worried. At her last appt, I asked if we could try different enzymes, to which her dr. agreed to try. It has been a little over a month, and still not seeing any changes. I am afraid that we may have to make more drastic measures <img src="i/expressions/face-icon-small-sad.gif" border="0"> She is so tired of being little. All her friends are so much bigger than her, can shop at 'cool' stores, where 'cool' clothes...and she can still wear a 6X/7. And people, even her own friends, treat her like she is in 2 or 3rd grade, not 6th grade. Uggghhhh....so frustrating!!
<br />
<br />I so feel your worry. We have been so lucky with the weight issues with my girls until the past few years <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not liking it!
 
P

Printer

Active member
By Grace's DS is going to have his FIRST appointment with a CF DOCTOR next week I'm certain that the CF Center in question will run all of the appropiate tests and diet changes. He is currently seeing a NON CF DOCTOR. I would suggest treatment will intensify next week

Relax everyone.

Bill
 
P

Printer

Active member
By Grace's DS is going to have his FIRST appointment with a CF DOCTOR next week I'm certain that the CF Center in question will run all of the appropiate tests and diet changes. He is currently seeing a NON CF DOCTOR. I would suggest treatment will intensify next week

Relax everyone.

Bill
 
P

Printer

Active member
By Grace's DS is going to have his FIRST appointment with a CF DOCTOR next week I'm certain that the CF Center in question will run all of the appropiate tests and diet changes. He is currently seeing a NON CF DOCTOR. I would suggest treatment will intensify next week
<br />
<br />Relax everyone.
<br />
<br />Bill
 
B

ByGrace

Guest
Mistyjo, I wondered about the possibility of him not absorbing enough. The doctor might suggest the fecal elastase test, but I haven't seen any signs of issues there. Is it possible to be constipated and still have those issues?

Sharon, I think you might be right, that since he is "atypical" it might not be necessary to keep him at 50%. I hope that will be the case anyway.

Bill, I'm sure you're right. Sometimes we mothers get carried away with worrying for our little ones. You sound like my husband... he's always bringing me back to reality and calming me down. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

ByGrace

Guest
Mistyjo, I wondered about the possibility of him not absorbing enough. The doctor might suggest the fecal elastase test, but I haven't seen any signs of issues there. Is it possible to be constipated and still have those issues?

Sharon, I think you might be right, that since he is "atypical" it might not be necessary to keep him at 50%. I hope that will be the case anyway.

Bill, I'm sure you're right. Sometimes we mothers get carried away with worrying for our little ones. You sound like my husband... he's always bringing me back to reality and calming me down. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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