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Crohn's Disease Forum » Parents of Kids with IBD » Looking for GI doctors who use EEN/nutrition therapy


05-29-2017, 01:27 AM   #1
jjlghoff
 
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Join Date: May 2017
Location: Wichita Falls, Texas
Looking for GI doctors who use EEN/nutrition therapy

I have a son( 10 yrs.) who was recently diagnosed with Crohn's disease. He has started on elemental/enteral nutrition. We are a military family so we know we will be moving in a few short years and are looking at what doctors (pediatric GI's) that use this in the USA so we can make a list of the air bases we can travel to. Has anyone used EEN before and did it work out for you? Do you happen to know of a particular doctor or medical center that uses nutrition therapy for Crohn's disease?
05-29-2017, 08:00 AM   #2
my little penguin
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Een is mainly used as an induction therapy 6-8 weeks then food is reintroduced with a maintenance med that has been building up to take over
Such as mtx or imuran or 6-mp

Supplemental en can then be continued with food
But once solid food calories passes 10-20% of the total diet then supplemental en is not an effective treatment by itself.

All major pediatric ibd centers in the us use een
And most treat with een 10-20% food as an option

Children's of Philadelphia
Children's of Boston
Cincinnati children's
Seattle children's
Nationwide children's
Etc...,,

The problem isn't whether they treat it
The problem becomes a psychological one
Not being able to eat solid food can be depressing and socially isolating especially for pre teens and teenagers

Long term formula only use can have issues with blood glucose/diabetes since blood sugar isn't stable on formula


Ds was dx at age 7
He is 13 now
He has done een for 6-8 weeks probably 3-4 times now
He has used partial en to help boost biologics
And maintain his weight /growth with that of his peers

What other meds is your child on to take over for the een
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05-29-2017, 10:09 AM   #3
jjlghoff
 
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Location: Wichita Falls, Texas
Thank you for your response! Originally we were at a pediatric hospital that didn't offer EEN, which is why I asked the question but was able to be transferred to one just a little farther away. Right now he is on elemental/EEN nutrition for 12 weeks and then he will go 70/30 at which point we will add in an scd diet. He is pairing this with pill medication which so far is doing well. He has been under weight most of his life so this boost of nutrition will help but I totally understand how long term it can affect him. My husband and I were just trying to look at the near future of what military installations would be close to some of the better hospitals that deal with this. Even though my son was recently diagnosed, I have been dealing with crohns for 9 years and now for either of us we have to drive hours away to get treatment. Hoping to prevent that for our next duty station. Again, thank you for your response!
05-29-2017, 10:32 AM   #4
my little penguin
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Optimistic can help with een combined with scd
05-29-2017, 11:27 AM   #5
Clash
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My son sees a pediatric GI group associated with Scottish Rite in ATL and they have used EEN as an induction therapy for treatment and then adjunct to treatment. I believe some of them may also use SCD(I know some use to not certain now).

Their office and Scottish rite isn't far from Dobbins FAB is Dobbins is still open. Sorry I haven't kept up with base closings and were not from that area.
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Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-29-2017, 01:28 PM   #6
Maya142
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I would definitely continue with partial EN when you go to the SCD diet, since your kiddo is already underweight.

My kiddo was extremely underweight until we started supplemental EN. She has put on 30 lbs and is no longer underweight. She also feels a whole lot better now that she is getting proper nutrition - she has a lot more energy and is much happier. Every time we try to remove the formula from her diet, she loses weight.

She uses a feeding tube because she was unable to drink the formula but many kids are able to drink it. A feeding tube is less scary and intimidating than it sounds, should it become necessary for your son.

Our hospital uses EEN and supplemental EN and occasionally the SCD, but it is in Philadelphia.

Good luck!
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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
05-29-2017, 03:06 PM   #7
pdx
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Location: Portland, Oregon

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My daughter also used EEN at the beginning of her treatment, and it worked very well for her. We are in Portland, OR, and many pediatric GI's here use EEN, but I don't think we have any bases nearby. The Seattle area might be a place you could think about. I know there are bases in the area, and pediatric GI's there are currently doing research into nutritional treatments for IBD, including SCD.

Good luck to you and your son--I hope he responds quickly to treatment.
__________________
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
05-30-2017, 04:30 PM   #8
Optimistic
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Hi. My son did EEN with steriods until he hit remission, and then moved to SCD and about 20% EN. We are 3 years into it. I'm happy to help! We have been guided by a group at Scottish Rite in Atlanta (very into SCD) and at Boston Children's.
05-30-2017, 08:07 PM   #9
Clash
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Don't want to get this thread off course but just wanted shout out to Optimistic on the 3 years with EN and SCD! Congrats!
05-31-2017, 05:57 AM   #10
sabrina123
 
Join Date: Aug 2016
If you ever get transferred to DC area, some IBD doctors at hopkins do nutrition therapy and nurses knowledgeable.

Good luck.
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