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Forum: FTT and Weight Gain Issues

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  #1  
February 17th, 2011, 03:58 PM
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and 33.2 pounds. She is not on the charts for her weight, but 42 inches tall and at the 4% for height. We have tried everything from PediaSure to adding extra calories to everything she eats and she just refuses to get bigger. Her BMI is 13.3 which is below the 5%. There really is no reason for her lack of growth so far other than her lungs being so bad she burns extra calories. I dont get it, but am getting very frustrated. She is by far the smallest in her kindergarten class and not catching up. We STILL get the 'she is so tiny' comments, and I just want her to be closer to average. Im afraid she will be in high school and 4 1/2 feet tall!!

Anyway, I just needed to vent. Thanks for listening.
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  #2  
February 18th, 2011, 11:40 AM
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Are they still saying it is just her lungs working harder? Have they done food journals or anything to make sure she is getting enough calories to grow?
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  #3  
February 18th, 2011, 12:30 PM
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Have you taken her to a feeding clinic? I'd get a referral to your local children's feeding clinic. They should have more ideas. Ava started out with similar issues, breathing burned too many calories to gain weight. We tried everything too. (I'd try resource breeze juices, get a script from your ped!)

((Hugs)) I'll be honest here and say the best decision I've ever made is the g-tube.
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  #4  
February 18th, 2011, 01:47 PM
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Quote:
Originally Posted by Ditzzy View Post
Have you taken her to a feeding clinic? I'd get a referral to your local children's feeding clinic. They should have more ideas. Ava started out with similar issues, breathing burned too many calories to gain weight. We tried everything too. (I'd try resource breeze juices, get a script from your ped!)

((Hugs)) I'll be honest here and say the best decision I've ever made is the g-tube.

No I have not. I am in central Utah and have no idea where the nearest feeding clinic would be, but I do know it would be no closer than 3 hours. I have not heard of resource breeze juice, but being that she wont drink juice, I doubt she would drink it. As far as a g-tube, no one has ever talked seriously about it, and since she is turning 6 years old I cant imagine they would want to do that now. I dont know if I would want it done either, I mean, she seems so old to have that done. I dont know, Im just at a loss anymore.
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  #5  
February 18th, 2011, 03:07 PM
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What does her GI Dr say?
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  #6  
February 19th, 2011, 09:46 AM
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Quote:
Originally Posted by Ditzzy View Post
What does her GI Dr say?
She has never seen one. She has never had GI problems and was tested for CF at our local hospita per her pediatricians request. She hasnt had GI issues other that reflux that causes aspiration which was diagnosed by her pulmonologist.
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  #7  
February 19th, 2011, 12:45 PM
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If she is eating enough to grow than there is a malfunction in her ability to absorb the nutrients. Her breathing problems...even with how severe they are...shouldn't be enough to keep her from growing. I would specifically have them look for enzyme deficiencies. If she eats the same amount as most six year olds and is still this small than there is most likely something going on to hold her back from growing other than her breathing issues...
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  #8  
February 19th, 2011, 01:25 PM
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lurking: does she follow a growth curve at all? I mean I know she is not on "the curve" but does she follow her own? If she is following her own then it shouldn't be a problem other then she is so tiny. BUT if she's not growing like you said, then she should be seen by a GI.
When my daughter was younger she was tiny (still is but normal) they tried to label her FTT so we took her to a GI where they can help rule out other issues. Just because she doesn't have BM problems or allergies doesn't mean that a GI can't help stear you in the right direction.

And Nichole is tiny (as is her sister) Your daughter and mine weigh about the same, but Nichole is only 40.5 inches. SHe is sooo skinny I can't imagine how skinny your daughter is at the same weight. And Nichole just turned 5, so she is younger then your dd as well.
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  #9  
February 20th, 2011, 07:41 AM
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I'm amazed that she's never seen a GI!! She's been FTT this long, she needs a GI Dr to check for malabsorbtion. I would get a referral for a GI and start there. You'd be surprised what they can help with.
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  #10  
February 20th, 2011, 08:36 AM
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Quote:
Originally Posted by Ditzzy View Post
I'm amazed that she's never seen a GI!! She's been FTT this long, she needs a GI Dr to check for malabsorbtion. I would get a referral for a GI and start there. You'd be surprised what they can help with.
I have never thought of malabsorption. She hasnt shown any symptoms of it, but thanks for the tip, I will definitely ask about that at her 6 year check.
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  #11  
February 20th, 2011, 11:16 AM
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no real advice but I can imagine how frustrating it must be. We are just now in the 10% but ped is still putting pressure on me for her weight. She's gaining about 1/2 oz per day and she wants 1-2 oz per day.
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  #12  
February 20th, 2011, 08:50 PM
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What baby gains 1-2 oz every day??? That is just crazy!!!
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  #13  
February 20th, 2011, 10:17 PM
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Quote:
Originally Posted by i3ai3ydanny View Post
If she is eating enough to grow than there is a malfunction in her ability to absorb the nutrients. Her breathing problems...even with how severe they are...shouldn't be enough to keep her from growing. I would specifically have them look for enzyme deficiencies. If she eats the same amount as most six year olds and is still this small than there is most likely something going on to hold her back from growing other than her breathing issues...
She does not eat the same as most 6 year olds. She eats very little, that is why her doctor had us start using PediaSure again. Maybe that is why they have never thought she had a malabsorption issue. She doesnt feel hunger they way others her age do, we know that much, and she is slowly outgrowing that I think. Trying to get a child to eat who simply is not hungry is challenging to say the least!! Her pulmo explained it to us as kids who have chronic lung conditions burn extra calories simply keeping their lungs going. A child with a lung issue who doesnt eat enough will suffer because the calories they DO take in go to where they are most needed, and growth falls second to health. Getting enough calories to support growth and then the extra for 'fuel' for lung function seems to be the trick, but we havent accomplished that yet. Some of this is genetic; I am 5 ft 7 in and 97 lbs and very small boned and my other kids are small, but have always had a much steadier rate of growth than her. She stays on her curve for awhile, then falls off again and all the while falling further away from that first line on the charts. Maybe she is just going to be tiny, but I dont want her to be in high school and not even 5 ft tall. I really thought that by 6 years old all this would be behind us.
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  #14  
February 21st, 2011, 08:33 AM
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I know there used to be a few moms on here who had the same issue. The whole never hungry feeling. There is a medication that they had to give their child because something wasn't transmitting the signals the way they were supposed to. He or she started eating a lot better after that... I don't remember who it was though... I am pretty sure they either had an Endo or a GI for the hunger thing...
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  #15  
February 22nd, 2011, 04:55 PM
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My daughter has a "feeding aversion". It doesn't really bother her to not eat, and she doesn't seem to have hunger cues. She will eat tiny amounts (like three to five cheerios) at mealtimes, but certain textures she chokes and gags on. She also gags if she gets too much of any one texture in her mouth.
She will drink liquids though, although it has only been about a year that she has taken enough to be a significant source of calories.
I don't know if any of this is similar to your DD, but she is followed very closely by a GI doctor. I would highly recommend taking her to one also.
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  #16  
February 23rd, 2011, 08:15 PM
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Thanks for chiming in! I knew we had someone but couldn't remember who it was!
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  #17  
February 26th, 2011, 12:15 PM
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new here... she sounds lke my C. almost to the T. she's small, always has been, and we keep waiting for her to "grow" all of a sudden, but I've accepted that isn't going to happen. she did better after her tonsils/adnoids were out, which helped her breathing issues, but she's still small. and we get the "she's solittle" comments all the timetoo. she's the oldest in her K class, but the smallest.

If she's eating, and on her own curve, meaning she might not be on their chart, but she's been consistantly on the same off the chart curve, that's good thing. C has always hung out at the 0-5% range, always. but since she is consistant, we aren't that worried any more.
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