Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » ?'s about beginning NG tube feeding + SCD


05-08-2013, 09:02 AM   #1
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
?'s about beginning NG tube feeding + SCD

My 16 yr old daughter was dx'd in the hospital w/Crohn's by contrast test.

She was put on TPN for 4 weeks and recently started the SCD intro diet. Which has gone well. She was tolerating food, her bowels were beginning to form and she was feeling well.

On day 4 of the SCD intro we were admitted to the hospital to have her PICC line removed and an NG tube placed in order to take in 80% of her calories by enternal diet.

Our plan is to do elemental diet (overnight tube feedings) at night and SCD food during the day for 6 weeks until she is able to have colonoscopy.

Last night was her first overnight feed and she work up w/a bad tummy ache and bad stool. She is on Peptamen.

My questions are:

1. Will the combination of Elemental and SCD work? Has anyone tried this?

2. Are loose stools to be expected on Elemental Diet?

Any advice?

TY!
Linda
05-08-2013, 09:10 AM   #2
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hi Linda and welcome.

I have not tried that combo But if my 4 yr old Grace could that we be the one I would considered.
Grace had her n-g tube for 5 months and now has a g-tube. Her stools were formed But some do have loose.
I'm going to page in Tesscorm. Her son did EN and is a teen.

Hugs
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
05-08-2013, 09:21 AM   #3
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Hi Linda,

My son did the enteral nutrition feeding overnight through NG as well. However, he was told that he wasn't allowed ANY food at all during the six week 'exclusive' period. During the day, all he was allowed were clear fluids - ginger ale, gatorade, jello, popsicles (no chocolate), clear candies (no choc or caramel), and broth. The broth was a huge help as it 'resembled' a meal!

I know that some GIs do allow some food while using EN but, my understanding is that to achieve remission, your best chance is to eliminate ALL food during the six weeks (other than the clear fluids). For comparison purposes, my son was ingesting 3000 cal per day while on exclusive EN.

As for stools, my son had mainly liquid stools while on formula only (but no pain or urgency issues). This isn't the case for everyone but, our dietitien had said it's not unusual - ie, liquid in, liquid out...

As for tummy ache... make sure the formula is not too cold. Also, perhaps slow down the rate - my son ran his pump at 200-250 ml/hour but he gradually worked up to this level. And, sometimes, you may have to change formulas... it could simply be that one formula just doesn't agree with your daughter... my son is on Tolerex, others are Modulen and Elemental (and there are others as well...).

Good luck!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-08-2013, 12:05 PM   #4
Willowcat05
Senior Member
 
Willowcat05's Avatar
 
Join Date: Jan 2013
Location: Glasgow, United Kingdom

My Support Groups:
Hi Linda

My son is doing total EN feeding just now for 8wks currently on week 6. At first his stools were really soft but as the weeks have gone on they have become formed. The sore tummy after being on the pump overnight maybe the mls per hour is to much and should be reduce my son is on 120mls per hour for 12 hours then he takes two 300ml during the day.

Hope everything calms down


currently on
Azathioprine 50mg
Ferrous Sulphate 200mg
05-08-2013, 11:30 PM   #5
CarolinAlaska
Holding It Together
 
CarolinAlaska's Avatar
 
Join Date: Jan 2013
Location: North Central, Illinois

My Support Groups:
Your daughter may need to gradually increase her rate since she hasn't been on any oral feedings for a while. I would also recommend that she not start the SCD until she's had the NG feedings for a few days to get the kinks out, then you can slowly introduce the SCD one food at a time - avoiding raw fruits and veggies (steamed or soft is better), fatty foods and so forth at first. I'm not totally aware of the SCD diet but I'm thinking along the lines of the crohn's diet and our daughter's reintro diet...
__________________
Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
05-09-2013, 07:41 AM   #6
greypup
Senior Member
 
greypup's Avatar
 
Join Date: Apr 2013
Location: St. Louis, MO

My Support Groups:
So we backed off of the rate of the overnight feedings. We went from 120 ML to 60 and held off of food yesterday.

I'm crossing my fingers that M will wake up and want to eat today and not feel nauseated and have tummy aches.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Diet/Cooking for Kids with IBD » ?'s about beginning NG tube feeding + SCD
Thread Tools


All times are GMT -5. The time now is 06:06 PM.
Copyright 2006-2017 Crohnsforum.com