Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Scopes done and EEN started


10-15-2016, 01:01 AM   #1
Mmmd01
 
Join Date: Aug 2016
Scopes done and EEN started

My son has had his scopes done Thursday and they said he has crohns. He has ulcers in the duodenum a lot in of ulcers in terminal ileum and patches through the large bowel. He woke up with a really thick feeding tube and not the thin silk ones no one knows why. He felt really good yesterday (day after scopes) had colour in his checks but as soon as he got down 250ml of the EEN it came back up with the tube. So tube was took out and he got the other 4 lots down but it was 1/2 strength and he was really full after it. They are upping it the 3/4 strength today then full Sunday to see if he can drink it if not he will be on over night feeds.
10-15-2016, 01:44 AM   #2
sickmom
 
Join Date: May 2016
Location: Greece
Hope he gets better soon. Is he taking any medication at this time? We're admitted as well and have been for a while now but doing tpn.
__________________
VEO IBD on infliximab, prednisolone, sulfasalazine, mesalazine, azathioprine, lansoprazole, follic acid, vit d3, elemental formula.
Past/occasional meds: metronidazole, piperacilline, cefotaxime, vancomycin, budesonide, methylprednisolone, omeprazole.
Diagnosed May 2015 at 7 months, still no remission.
10-15-2016, 11:53 AM   #3
Mmmd01
 
Join Date: Aug 2016
No he is not on anything they are going to start something in 2/3 weeks but I really can't remember that much as it's been information over load the last few days
10-15-2016, 02:16 PM   #4
Maya142
Forum Monitor
 
Maya142's Avatar
You could try a thinner feeding tube - that might be easier to keep down. We used an infant tube - 6Fr - and that worked very well and wasn't too uncomfortable (after the first day).

Also, it takes a lot of trial and error to find a rate that works. Some kids can tolerate pretty fast rates, and others, like my daughter, need the rate to be VERY slow.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-15-2016, 08:11 PM   #5
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Yes, 250 ml.......was that over a day or an hour?
My grace was 3 but had to start very slow.
__________________
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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
10-16-2016, 02:21 AM   #6
Mmmd01
 
Join Date: Aug 2016
He isn't in a feeding tube now just watered down feeds until today when he will get the full stuff he was on 250ml 5x a day today will be up to 300ml 5x but he was getting full yesterday and didn't manage to drink any water in between so will have to see if he takes it all today. We was told as long as he can finish it all with drinking it he won't need the tube back in.
10-16-2016, 08:17 AM   #7
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
That's wonderful
Ds drank all of his orally
He drank 8-9 shakes (peptamen jr ) which were 250 ml containers a day
Good luck

Be prepared some kids have a much harder time digesting the 1.5 cal formula vs the lower cal 1.0 cal formula
__________________
DS - -Crohn's -Stelara
10-16-2016, 08:32 AM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
That's great! As long as he can drink it, he can probably avoid a tube. Way to go!!

We found that drinking too fast = nausea/vomiting for my daughter, so sipping worked best for her. Having the shakes cold also helped since then the taste didn't bother her as much.

Good luck!
10-17-2016, 04:07 AM   #9
Mmmd01
 
Join Date: Aug 2016
My sons having modulen 300ml 5x a day but he just can't drink it he had a thin plastic tube put in yesterday because they are not sure if he can have the silk one because he can't have some plasters. He's had a few feeds now and feels better no feeling sick from it. Just need pump training now then we can go home yay been here since Thursday.
10-17-2016, 12:09 PM   #10
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

My Support Groups:
My sons having modulen 300ml 5x a day but he just can't drink it he had a thin plastic tube put in yesterday because they are not sure if he can have the silk one because he can't have some plasters. He's had a few feeds now and feels better no feeling sick from it. Just need pump training now then we can go home yay been here since Thursday.
Glad to hear that things are going better with the thin tube, and that you'll be heading home soon. My daughter used a tube for several months, and it really helped her; hope it works well for your son too.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Scopes done and EEN started
Thread Tools


All times are GMT -5. The time now is 03:20 PM.
Copyright 2006-2017 Crohnsforum.com