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Getting into Remission with Enteral Nutrition so far, so good!!!!


Sat, April 10, 2010 12:00 AM

Ben (age 7, Columbus OH) who is a newly diagnosed (last July) steroid dependent stomach & small bowel Crohn's patient, started this treatment on Thursday, we were admitted to the ped GI unit for a couple of days/nights to start...the enteral feeding is via nasogastric tube (no big deal for a kid who has to endure frequent lab draws and swallowing many large pills daily) and his pediasure runs in at 115 mls per hour for 14 hours.  The home care provided a small backpack that holds both the enteral nutrition and the pump so it is no big deal for him...he is mobile or can sleep with it going.  He is getting 90% of his caloric needs met this way, and can eat whatever else he wants...usually just a popsickle or juice during the day...or he can have a bit of lunch at school...what relief in no longer coaxing to finish dinners....

He has tremendous energy and happiness....I know it is working already!

FPO ecsmit
Joined Jan 25, 2010

Thu, May 06, 2010 2:55 PM

 Reply posted for ecsmit.

  It's official, Ben IS IN REMISSION with ENTERAL NUTRITION!!  After only 4 wks. and eating 10% real food while getting 90% of his caloric need at night.  He is off ALL meds too!!  This is the way to go for kids and all kids with Crohn's should attempt BEFORE the big guns like Remicade and Humira.  Before surgery too!! Why don't people in this country choose this for their children?  This is first line treatment in Europe, Japan and Canada folks....the only city in the US that does this routinely is Philly, PA.  Well, we are working on Columbus, OH!!!  

Ben will continue with the EN while catching up on his height, his weight is already caught up.  Please feel free to contact me, and join our virtual support group on Facebook: Pediatric Crohn's Parents.

 

FPO ecsmit
Joined Jan 25, 2010

Sun, May 02, 2010 11:25 PM

 Reply posted for ecsmit.

I am so glad this is working for you all!


Claire's Mom

FPO azmom
Joined Jul 20, 2009

Tue, April 27, 2010 12:00 AM

 Reply posted for ecsmit.

Update on Ben....all is well with the enteral nutrition.  The tube fell out Sunday night (he was sneezing) so I took him to urgent care next day.  Tube is back in now, it was a little uncomfortable going in, but he was fine once it was down.  They did an xray to check placement, which, is reason enough to learn how to replace it myself next time...too much abdominal radiation over the lifetime might be one of the reasons cancer is high in Crohn's pts.  We do check the placement of the tube before starting the feeding every night, with a stethoscope and a litte air pushed into the tube. Weight gain is stable....he continues to look & feel great.

First follow up appt. and labs will be May 11...

FPO ecsmit
Joined Jan 25, 2010

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