If you or your child needed a G-tube, what was a bigger factor: BMI or the growth chart?
Emily is really tiny for her age; growth failure is what led to her dx. She was just over the 5% on the growth charts for her height and weight at the time of dx.
Anyway, here is the story: once she started enzymes she started gaining weight nicely and as a matter of fact, she's gained about 6 pounds in the last year- which is amazing! It's more weight than she'd gained in the previous 5 years. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's also grown 2"- nearly as much as she'd grown in 5 years. However... it's very little progress made on the charts, because a kid her age gains, on the average, 5 or 6 pounds a year and a couple inches, and so at this rate she isn't gaining much ground (she's gone from the 5% to about 12% in weight and 7% in height.) I know she's gained more than 6 pounds but she loses weight when she gets sick and she's had a couple really nasty illnesses. You know how that goes.
Here is my concern: her BMI has gone up a bit since her weight is now higher than her height on the growth charts. But she is still so small and thin; you should see this kid compared to everyone else in her grade. When I measured her for school clothes last fall at 7.5 her chest was 21". This didn't mean much to me until I read posts that toddlers could get a Vest when they hit 20". I know how important nutritional status is for maintaining pulmonary health and it's frustrating to see the setbacks on the scale with every illness. But if they go strictly by BMI, that is (very slowly) creeping up over time even if it's due more to slower gains in height on the chart than anything else.
She has a big appetite and eats a wide variety of good food. We are working with enzymes and have eliminated a lot of greasy poop at this point with 2 Creon12's with snacks (3 if it's something enormous) and 3-4 with a meal. We try to keep ahead of illnesses with increased treatments.
So far the possibility of a g-tube is one we've only had to dance around since she's gained weight between most appts, but her size has been of big concern all along and she went into this at a big disadvantage. I know only her dr's can give us the decision-making guidance we need, but I was looking for input from any of you with experience here...
Emily is really tiny for her age; growth failure is what led to her dx. She was just over the 5% on the growth charts for her height and weight at the time of dx.
Anyway, here is the story: once she started enzymes she started gaining weight nicely and as a matter of fact, she's gained about 6 pounds in the last year- which is amazing! It's more weight than she'd gained in the previous 5 years. <img src="i/expressions/face-icon-small-smile.gif" border="0"> She's also grown 2"- nearly as much as she'd grown in 5 years. However... it's very little progress made on the charts, because a kid her age gains, on the average, 5 or 6 pounds a year and a couple inches, and so at this rate she isn't gaining much ground (she's gone from the 5% to about 12% in weight and 7% in height.) I know she's gained more than 6 pounds but she loses weight when she gets sick and she's had a couple really nasty illnesses. You know how that goes.
Here is my concern: her BMI has gone up a bit since her weight is now higher than her height on the growth charts. But she is still so small and thin; you should see this kid compared to everyone else in her grade. When I measured her for school clothes last fall at 7.5 her chest was 21". This didn't mean much to me until I read posts that toddlers could get a Vest when they hit 20". I know how important nutritional status is for maintaining pulmonary health and it's frustrating to see the setbacks on the scale with every illness. But if they go strictly by BMI, that is (very slowly) creeping up over time even if it's due more to slower gains in height on the chart than anything else.
She has a big appetite and eats a wide variety of good food. We are working with enzymes and have eliminated a lot of greasy poop at this point with 2 Creon12's with snacks (3 if it's something enormous) and 3-4 with a meal. We try to keep ahead of illnesses with increased treatments.
So far the possibility of a g-tube is one we've only had to dance around since she's gained weight between most appts, but her size has been of big concern all along and she went into this at a big disadvantage. I know only her dr's can give us the decision-making guidance we need, but I was looking for input from any of you with experience here...