My daughter was just dx'ed with cf a few weeks ago and had been dx'ed with growth failure by the endo she saw just prior to her cf diagnosis. She is 7.5yrs old and bounces around between 42-44lbs, which falls in the 5th-10th% for age, respectively.
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<br />However, this isn't a static lack of gain; illness w/ anything from prolonged colds/viruses to the predictable 2ndary infections that follow (ear or sinus infections, bronchitis and then last winter, pneumonia) results in her weight predictably dropping to about 39lbs and takes her months to regain- by which time she's often hit with her next illness. Repeat the cycle and you've got growth failure over the course of time. (Don't get me started on the anger and frustration at her ped in allowing this to continue so long.)
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<br />Anyway, she now will be getting her care at a very good accredited center and they are of the school of thought that nutritional status, weight and lung function all affect each other and her drastic periods of weight loss were all indicative of times she was much sicker than we realized. They want to see her gain substantially and feel this will benefit her enormously. She has major ground to gain both in nutritional deficiencies (we will find out exactly what when she has labs for this in 2 wks but we are making assumptions based on the process of non-growth that she has gone through since age 3) & lack of weight gain and this worries me.
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<br />They don't think it's a hard & fast 'rule' but feel that when kids reach the 50% at age 4ish that this is a good predictive indicator for lung function for a greater period of time- so they aggressively work in that direction for kids. I still don't know much about this for kids and nothing about the process for adults...
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<br />However- I have a question, caseylovessamuel. You mention losing weight over the last few months. Emily predictably loses weight when ill, and overall has gotten to be much too thin over time- so I have become accustomed to watching her weight very closely over the last several yrs. She is again losing, without any visible signs of infection. What, if you have ANY idea, is the cause of loss for you, when you are not sick? (She has just started enzymes and I know we have a long way to go in fine-tuning them but I assume taking any at all should be helping and her appetite continues to be very good, as it always has been.) I plan on, of course, asking the nurse or dr or whoever at the clinic about it, but would appreciate input.
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<br />I apologize enormously for the thread 'hijack' and will start my own thread w/ my questions if it's more appropriate!
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<br />(I have a thread in the New Dx forum so I apologize for any who saw some of this story already! <img src=""> )
