Share Facebook


 
04-13-2014, 02:34 PM   #181
SupportiveMom
Forum Monitor
 
SupportiveMom's Avatar
 
Join Date: Mar 2013
Location: Toronto, Ontario

My Support Groups:
· Stoma
Doc is preparing us for both. Trying NG tube first. But due to her vomiting already there is a possibility she won't tolerate the NG tube and would have to go g tube. I'm told if it is a g tube its temporary and easy to have removed.

__________________
Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
11-02-2014, 08:08 AM   #182
girlscout
 
Join Date: Jun 2010
Location: Westborough, Massachusetts

My Support Groups:
Here in the states it depends on your insurance as well. O's EEN was Boost and Ensure and it was all covered. She drank it. The company delivered cases of it at a time.

Hi, I'm inquiring about other experiences with using Boost Ensure (drinking it). Our GI has suggested this option because prednisone is ineffective for my Son and we don't want to use Remicade. Has it been effective? How quickly? It goes against my "SCD" sugar is bad perspective but I'm trying to be open minded.

My Son's first diagnosis was when he was 10. He was treated with prednisone, budesonide and 6MP. After 1 year we started the SCD. He went into full remission. After 2 years on SCD and being symptom free, he returned to a "normal" diet. After 1 year Crohn's returned. At 14 now, he's been on prednisone for 6 weeks along with SCD. We are not surprised that the steriod is not working. Also, I know he's cheating on SCD, plus I could not convince him to do the intro diet long enough and was worried about him getting enough calories to support him while he's running cross country in high school, so I probably introduced complex foods too quickly.

Son says he'd rather do ensure/boost route than SCD.
11-02-2014, 08:17 AM   #183
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
EEN can induce remission when done as formula only no food
That said however - most lose remisson once more than 10-20% of the daily calories are returned to solid food.
I understand being hesitant on remicade but undertreated crohn's can be dangerous and deadly. So you need something .
EEN is not a long term solution especially given your child's age and growth potential .
It tends to be done for only 6-8 weeks. While waiting for maintence meds to kick in.
It can be added as supplemental to push things over when a med isn't enough by itself.
Or added just to ensure nutrition and growth take place .
DS started on EEN for 9 weeks with 6-mp
It wasn't enough to induce remission

You could try Mtx before remicade
It works for some as a monotherapy
It didn't work for my son.
He eventually needed remicade.

I wish I could say it was easy but it wasn't.
Also EEN has a much lower response rate at inducing remission after disease has been present for a while and other drugs have been needed.

Good luck
__________________
DS - -Crohn's -Stelara
11-02-2014, 08:27 AM   #184
girlscout
 
Join Date: Jun 2010
Location: Westborough, Massachusetts

My Support Groups:
Hi My Little Penguin,

I'm not sure about your abbreviation does Mtx==Methotrexate? GI said we'd have to use Methotrexate along with the Remicade. I assume you are suggesting that we switch to Methotrexate now, try the EN, and then go to Remicadee if all else fails?

THX again
11-02-2014, 10:28 AM   #185
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Mtx is methotrexate
So Mtx by itself
However you may want to ask the Gi why he was recommending remicade
What the disease severity is and where it was active now .
He is recommending remicade for a reason.
You need to understand the pros and cons

Most recommend Mtx with remicade to reduce the production of antibodies .
However studies show mixed results as to whether that really stops antibody.
DS did remicade alone
But had two allergic reactions by the 7th and 8th infusion
He did not have antibodies but tends to be a very allergic kid
Anaphylaxis to foods bees etc....
He then switched to humira.

Biologics by far although scary have had the least side effects for my kiddo
I wish we had tried them sooner.
I will tag a few members who also are on biologics
Tesscom
Clash
Jmrogers
Farmwife
Mehita
Araceli
Crohnsinct
Brian'smom

All will tell you the same
11-02-2014, 12:23 PM   #186
Clash
Forum Monitor
 
Clash's Avatar
 
Join Date: Apr 2012
Location: Georgia

My Support Groups:
My son was on remicade and mtx. We dropped remicade before surgery and have now added it back. He has had no side effects from either med but both were not enough to control the inflammation. Hopefully now it will be.
__________________
Clash
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
11-02-2014, 05:30 PM   #187
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
Remicade only here with no side effects and it's been DS's wonder drug!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
11-02-2014, 10:41 PM   #188
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
My DD did EEN as a solo therapy but wasn't enough to help.
She is now on Remicade and MTX with no side effects yet.
__________________
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
11-02-2014, 10:58 PM   #189
Jmrogers4
Moderator
 
Jmrogers4's Avatar
 
Join Date: Jun 2012
Location: Boise, Idaho

My Support Groups:
Remicade only here but we did use methotrexate as a mono therapy with good results as far as disease control unfortunately my son was one of the extremely rare few who have lung issues while on it so we had to discontinue also the reason we are doing remicade as a mono therapy but it is working well for him.
We did EEN about a year ago in place of prednisone to try and get a flare under control, symptoms subsided but his fecal calprotectin numbers went up which is one of our few markers that actually tell us what is happening.
We tried the SCD for what's it's worth, it was too hard for him to stick to and he just didn't get enough calories from what he actually would eat and we already had major growth and weight issues. For us any diet that he is not fully on board with isn't going to work because I'm not/can't be and don't want to be with him 24/7. For the most part I let him have 95% say in treatment as he has to deal with the daily living with CD but I get final say currently but he knows he opinions are being heard.
We went EEN last year because he told his GI he refused to do prednisone so what were his options. GI told him EEN but it was very hard for people to stick to and he had to be 100% committed otherwise prednisone was a better option. Jack said he was on board with EEN and wanted to go that route. I don't think it would have worked otherwise as we had an awful time getting him to drink the supplements when he had to for supplemental nutrition because he didn't want to. So I think especially with a teenager who are apt to try and control whatever they can especially when things feel out of control and diet is one are they can control or cheat that unless they are 100% committed it's not going to work. Make sense?
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
11-03-2014, 09:33 AM   #190
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
My son did exclusive EN for 6 weeks to induce remission and then continued with supplemental EN (1/2 dose, 5 days/wk) as his maintenance treatment for approx 2 years. It did induce and maintain clinical remission (no outward symptoms) and reduced inflammation, however, it did not eliminate all inflammation (confirmed by MREs). Upon his transfer to an adult GI, his new GI was adamant that the simmering inflammation would lead to permanent damage and complications and strongly recommended remicade. We followed his advice and he has been on remicade for almost two years.

He's had no problems with remicade. We did tighten his schedule (from every 8 weeks to every 6) but this was because testing showed no remicade left in his system at 8 weeks. He goes to his infusions, usually sleeps or takes his laptop and just relaxes. He feels fine after his infusion and has sometimes gone directly to see friends or even to the gym right afterward.

Some do feel fatigued after the infusion but that may also be related to premedication with benedryl (as per some GIs preference).

An MRE done after being on remicade for a few months showed significant inflammation improvement and even narrowing that had previously be apparent, was no longer seen.

A friend who's daughter (approx. 13 years old) also has crohns, is being treated with remicade and mtx. She does feel a bit fatigued after her infusion but is otherwise fine. And remicade has been a huge improvement for her as well!

__________________
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
11-03-2014, 06:57 PM   #191
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
We started Remicade 2 years ago due to anal fissures. My daughter was symptom free for one year but Crohn's was working it self from terminal ileum to other parts. She did not have any symptoms so we thought the other meds were working, she is on remicade every 8 weeks by itself and no side effects at all. To us it has been the miracle drug, it was very hard to decide on it but now I hope she can stay on it for long time. Whatever meds you choose I wish you the best outcome.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
11-04-2014, 02:55 PM   #192
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: Connecticut

My Support Groups:
Hi there! Another IV Leaguer here.

The way our doc describes EEN, SCD, FODMAP etc is that they are nutritional therapies and can work BUT only when done 100%. When you come off it is just a matter of time before disease creeps back in. That time differs for each person. At our last appointment, he did say there is encouraging research coming from Isreal with diet (very similar to FODMAP) and also that there are some clinics here in the US who are using a period of EEN, then regular diet then back to EEN. While these are all encouraging he isn't quite ready to use these protocols on patients with active inflammation. Perhaps he will be starting with patients in deep remission for over a year and see how it goes.

My daughter went straight to Remicade as she was very sick and we didn't have time to play around. Remi only worked while she was on steroids as well. Every time we tapered disease kicked back up. Doc wanted to add Mtx to the Remi. We declined Mtx and added did EEN for 6-8 weeks and it got her to remission. She does great on the Remi and has been on it for almost 3 years with only Remicade induced psoriasis as a side effect. We eventually added Mtx but that was for psoriasis.

If the doctor feels you have time to give EEN a try, I would try that but you do have to prepare yourself for what you are going to do to keep him in remission. The thing about cycling on and off EEN is you have to be careful about disease kicking in and then subsequent healing and the building up of scar tissue. You really want to get to remission and stay there as much as possible.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
11-30-2014, 03:19 PM   #193
girlscout
 
Join Date: Jun 2010
Location: Westborough, Massachusetts

My Support Groups:
Hi everyone,

Here's an update on my 14 yo son who started EEN Boost about 4 weeks ago. He had blood work done on Tuesday and his CRP is down to 1.1 mg/dl (from 5.6mg/dl)! Tomorrow I'll be talking to his GI to find out what the next steps are. He was scheduled to begin Remicade on 12/2. I'm just not sure what his GI will say about that. I'm hopeful we can put it off a bit longer but I'm trying not to get my hopes up.

He is also on 20 mg pred. We D/C'd 6mp on the day before the blood draw at his GI's recomendation in preparation to moving to MTX once he's on Remicade.


Son 14 yo CD since 2010. Pred, only at the moment. Previously 6mp.
11-30-2014, 03:54 PM   #194
Pilgrim
Senior Member
 
Pilgrim's Avatar
 
Join Date: Jul 2014
Location: Ontario

My Support Groups:
That's good news. I hope the improvements continue!
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
11-30-2014, 07:08 PM   #195
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Make sure you discuss the length of time of EEN with the Gi .
It tends to work like pred in that it lowers the inflammatory numbers but generally can't be used long term since once you start food the inflammation starts to come back .
So you will need to discuss a long term med with the Gi if you don't intend to do remicade .

Also before you sign your kiddo up for EEN only for life - try it yourself for a week .
Being a teenager who doesn't get to eat is doable short term but longer term can be extremely hard.
02-17-2016, 02:36 PM   #196
josiemk
 
Join Date: Feb 2016
Location: Waconia, Minnesota
Thank you for sharing! My nephew (15) just finished his exclusive nutritional therapy and is now being reintroduced to solids. He took labs yesterday after 101 days of exclusive therapy and we are awaiting results. His physician says the true test is how he responds to food after. We were given a list of foods to get him back on solids but they are full of preservatives and are difficult to digest. There is a recommendation to stay away from foods high in fiber. My older niece has a similar recommendation because she has tiny intestines and they want to prevent blockage, but you nephew doesn't have this concern so I am unsure of why this is the recommendations. My nephew is an unusual kid in the sense that he has always been health conscious and doesn't like unhealthy football so we have been trying to modify the list in a way that makes sense. Right now he has been sipping on organic apple juice and I was going to make him vegetable soup, thinking the boiling will get rid of the fiber. My concern is he will not get enough calories. Any advice?
Josie
New to this forum....so happy to have found it!
My 8 yr old son was diagnosed with Crohn's in July 2009 and was on prednisone and Imuran for about the first 8 months....when his docs realized how severe his case was and that he was steroid dependent to stay in remission, they offered a choice of biologics (remicade/humira) or enteral nutrition. I am an RN who has cared for patients on tube feeding so I new we could do this....but new it would be a leap for Ben...having an NG tube taped to his face for a month at a time. But when I researched the biologics I couldn't believe the risks...frightening to me. So I decided to search for education on how to approach the tube feeding treatment....there was not much, even his docs wouldn't choose it for their own kids!! I finally found a book called, Beat Crohn's - Getting into remission with Enteral Nutrition by Margaret Oppenheimer...this book was like EN for dummies!! It validated my thoughts on the safety and effectiveness of this treatment for my son to the point that it was a no brainer....he even read parts and bought in to it.
He started EN via NG tube in April 2010 and within the first month was off all meds and bouncing off the walls with energy....full remission. Pain was gone, and he started catching up on growth. Now he has a PEG tube so we can keep doing this treatment and the world doesn't have to know about it....

Here's my question...why don't more kids in the US and Canada choose this option? If it is due to lack of education and the unknown, or just scared to try....I am ready willing and able to talk to you, help out, show you how, etc.
At Ben's appt. in May this year, he has grown 4 inches in the past year and a half, and has gained 15 pounds!! Still off meds, missed hardly any school. He tube feeds for about 8 hours over night and can eat what he wants during the day....

What do other moms think about this treatment? Would love to hear your thoughts.....

Beth
02-17-2016, 02:48 PM   #197
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Fibre is more difficult to digest and cause some people to have difficulties. I know when my son reintroduced foods, it started with 'white' foods - breads, pasta, rice, cereal, etc. and then we added proteins. Dairy, fruits/veggies after (can't remember which came first). My son was to reintroduce each food types over the course of 3-5 days.

FWIW, I did post my son's reintro diet - I think either here or on the Kids on En thread.

But, from what I know now, my son's reintro was quite quick. There are others who reintroduce foods at a much slower pace. And, reintroduce foods one or two at a time, rather than an entire food group at once.

Is he doing any supplemental EN? After my son completed his six weeks of exclusive EN, he continued with supplemental EN at 1/2 dose (1500 cal/day) for the next two years, in addition to his regular diet. He ingested his EN formula overnight thru NG tube, so this helped in that it didn't interfere with his daytime diet (ie wasn't too full from drinking a shake to eat his lunch...). But, even if your nephew can't get in 1500 cal/day, even some supplementation will help ensure he is getting all his nutrients.

As far as 'low fibre' fruits/veggies - I know cooking, ie soup, helps to make them easier to digest and I've also read of lots of members juicing to get their fruits/veggies. Also, when we were reintroducing fruits/veg, we were told to avoid seeds, skins and membranes (ie skin around orange segments).
02-17-2016, 03:49 PM   #198
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
You can't go straight to food
You add food slowly while still drinking formula to make up the difference in calories
Healthy doesn't necessarily mean it's good for a crohns gut
Even in remission it's still not functioning at 100%

Cooked veggies still have fiber
Juiced veggies with pulp removed do not
Plain rice
Boiled chicken
Potatoes mashed

Anything that can be mashed with a fork first
Then more solids
Takes a few weeks
Get back unhealthy food first ( easy on the gut food )
It's not for life just a few weeks
Then try out which veggies he tolerates

Potato soup with zucchini purée is a favorite at my house
Hugs
07-31-2017, 09:32 PM   #199
bethhall3434
 
Join Date: Jul 2017
Location: Forsyth, Montana
Both my daughter (8 yr old twins) are doing enteral therapy and it has really helped with growth. With one it isn't helping her inflammation like we had hoped, but for growth, and energy it is awesome. One daughter was diagnosed earlier and had the NG tube for 6 months, she now has had a G tube for over a year. Her twin sister was just diagnosed a month ago and has her NG tube. It's not ideal, the G tube is so much easier (and not visible). We are hoping she healthy enough to get s g tube placement in Sept. it's nice to talk to another parent who goes through what our family does.


08-15-2017, 02:12 PM   #200
richard1353
 
Join Date: Aug 2017

My Support Groups:
I read these all! Thanks everyone!
08-15-2017, 02:12 PM   #201
richard1353
 
Join Date: Aug 2017

My Support Groups:
Do you try the SCD diet on your child?I know you have made a great contribution to this forum. I know some succeed example for SCD diet. My child has EN for 8weeks and I want to have half EN and SCD diet after he will be in remission. Of course I will take the meds under the doctor's guidance at the same time. Thank you very much!
You can't go straight to food
You add food slowly while still drinking formula to make up the difference in calories
Healthy doesn't necessarily mean it's good for a crohns gut
Even in remission it's still not functioning at 100%

Cooked veggies still have fiber
Juiced veggies with pulp removed do not
Plain rice
Boiled chicken
Potatoes mashed

Anything that can be mashed with a fork first
Then more solids
Takes a few weeks
Get back unhealthy food first ( easy on the gut food )
It's not for life just a few weeks
Then try out which veggies he tolerates

Potato soup with zucchini purée is a favorite at my house
Hugs
08-15-2017, 02:14 PM   #202
richard1353
 
Join Date: Aug 2017

My Support Groups:
There are many guidance suggestions for this topic!
08-15-2017, 03:35 PM   #203
Maya142
Forum Monitor
 
Maya142's Avatar
 
Join Date: Jul 2013

My Support Groups:
If you make a new thread about diet, you are likely to get more suggestions for your kiddo.

There are a couple parents who have had success with diet alone - I'll tag Optimistic here because her kiddo has done GREAT on the SCD.

There are also some parents who have used the IBD AID diet.
__________________
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
08-15-2017, 10:04 PM   #204
Optimistic
Senior Member
 
Optimistic's Avatar
 
Join Date: Oct 2014

My Support Groups:
Hi Richard. Do make a good post because you will get lots of insight from more recent posters. My son got into remission with steroids and EEN. He then moved skowly from about 80\20 EN and scd 20/80ish EB AND SCD. It is a delicate house of cards but still to be working. Another MRE soon to be sure.
08-17-2017, 06:21 AM   #205
richard1353
 
Join Date: Aug 2017

My Support Groups:
Thanks a lot! I learn and study the Crohn's disease , SCD diet and so on, because I havn't known this name before one month ago. When my child finish his EN after 8 weeks(two months), I will have new post to ask your suggestions for the medicinal and diet plans. I appreciate your warmly responses, whether it is for the past , at now and in the future! THANKS AGAIN!
Reply

Thread Tools


All times are GMT -5. The time now is 02:57 AM.
Copyright 2006-2017 Crohnsforum.com