I normally do not read many forums, and have never posted on any; I was looking up Margaret Oppenheimer, hoping to find her email address and found this forum thread.
My daughter, age 11yrs, uses enteral nutrition with great success and has for the entire year (dx Sept 2008) since diagnosis. She'll likely use it throughout her teen years, as long as she remains willing. I don't understand the posts that speak of it as a "diet" and mention "what happens when going back to regular food".
She eats regular food, in varying amounts. Some days she eats well, and therefore I reduce the amount of formula that day, and on days when her appetite is poor ( she has intermittent early satiety) she receives more formula; this keeps her daily caloric intake fairly reliable. She does not drink the formula, rather, she places an NG tube nightly and the formula is delivered via feeding pump. In the morning she simply removes the tube and goes about her day.
When very sick and symptomatic, at diagnosis, she ate almost nothing for the first two months but the formula provided complete nutrition. What a relief it was and is to know that mal-and undernutrition isn't a worry with her as it is for so many ped Crohn's patients.
It has NOT brought her to biochemical remisssion ( lactoferrin is always high) but she is in clinical remission and lives a normal life, grows like crazy, (4inches in 12 mos, 40 pound weight gain) and started puberty.
At diagnosis she was 59 lbs, down from her norm at that time of 78lbs. She is now 106lbs and this is NOT steroid weight; she hasn't been on steroids since diagnosis, for six weeks total including wean. This is true lean mass. Her BMI according to her GI is "perfect".
Any parents who would like to know more please feel free to email me. Hope this helps someone considering ( or doubting the efficacy of ) this excellent yet grossly underused treatment.
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11yr old female patient
Dx Sept 2008
No medications at this time
Enteral nutrition VitalJr formula
Post Edited By Moderator (Nanners) : 11/9/2009 11:53:14 AM (GMT-7)