Crohn's Disease Forum » Parents of Kids with IBD » GI with milder treatment philosophy/approach

03-28-2018, 04:02 PM   #1
Join Date: Dec 2015
Location: Dallas, Texas
GI with milder treatment philosophy/approach

Our son is 14 and is on Remicade for 2 years. He is under remission. All tests - colonscopy, MRE, blood reports, are either normal or "closer" to normal, if not heading toward normal.

While we love(yes) the science behind biologics, they loose effectiveness unpredictably. Additionally, our son is at a prime age of growth including pubertal growth and not sure if there is enough research on biologics and teenage growths.

With the above two things in mind, we would like to explore other options for pediatric GI whose approach/philosophy in alternate or milder treatment is well proven.

We are open to travel to any part of the world. Prefer USA or Europe as we live in US.

We have tried to find someone in Boston's Children, Mayo clinic, Cleveland Clinic and Stanford. However, we are having difficulty in searching their philosophy/approaches within these mentioned hospitals before we take appointment. We are open to within these hospitals as well as outside.

Your help is appreciated.
03-28-2018, 05:22 PM   #2
my little penguin
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Join Date: Apr 2012

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Mine is 14 and has been dx since age 7
As parents we all wish for milder treatment
And the ideal dream of NOT needing those heavy meds

All I can say is DONT stop a med thatís working
Especially during puberty
It can be a long battle back to remission
There are studies showing biologics improve growth in kids

My kiddo had to stop humira last feb due to surgery (no Crohns related )
His Crohns and arthritis were both in remission

By time he restarted humira (months later )
Arthritis and Crohns were both flaring badly even though he had been on methotrexate
We added humira back
Didnít work
Given he had an allergic reaction to remicade he was now out of approved for kids options

Months of steriods (stops growth ) while trying desperately to get insurance to approve Stelara
And then more months of steriods waiting for Stelara to work (it takes six months to work )
Ds was dx with adrenal insufficiency from so many steriods
Now One year later Ds is finally starting to feel better a bit Crohns wise
Has to be followed by Endo
Has to take stress dose of steroids for any procedure/illness

So in his case we do not stop unless there is a reaction or it stops working
Itís very hard to get remission in kids and even harder to stay there through puberty

Once you stop a biologic you canít use it later
The body doesnít work that way
DS - -Crohn's -Stelara -mtx
03-28-2018, 05:37 PM   #3
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Maya142's Avatar
I am going to tag all the parents I tagged over on your other thread:

I have said a lot on your other thread, but the last thing I want to say is that for growth, the one drug you do want to avoid is Prednisone (and other steroids). That is known to halt growth. So I would be very careful on reducing meds or stopping meds, because it could easily lead to a flare which could lead to Prednisone.

Plus, you may lose a biologic that is working well for your son.
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
03-28-2018, 06:37 PM   #4
Senior Member
I am responding to this:
"While we love(yes) the science behind biologics, they loose effectiveness unpredictably. Additionally, our son is at a prime age of growth including pubertal growth and not sure if there is enough research on biologics and teenage growths."

Children with Crohn's grow best both before and during puberty when their disease is well-controlled. Children who have not grown well due to Crohn's, can have catch-up growth after starting biologics (or other drugs) that decrease inflammation. [Steroids are an exception because they inhibit growth.] I would be very wary of stopping a drug that is working well, especially during puberty, unless you are seeing a significant side effect.
03-28-2018, 08:55 PM   #5
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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I hated that I had to have my son start remicade... it was a tough decision and then very tough to accept. But, I knew the consequences could have been worse, which he would have had to pay... and, selfishly, I also was afraid of the guilt I would have felt had I said no to a medication to only have my son pay the consequences.

He's now been on remicade for almost 5 years, throughout he's felt well and has remained in remission. It allowed him to go through university, start at his first real job, he's played hockey throughout, had an active social life, etc... all the things young adults experience.

I still wish more than anything that he could stop remicade but not at the expense of a flare.

Accepting that your child needs these meds is so hard but the risks are small. And, I tell myself that I allowed my son to take lots of risks to improve his quality of life... he played hockey with lots of hits, etc., he drove and was driven by inexperienced teenage drivers, he went to friends' cottages with all the risks of water, etc., etc., etc. But, all these experiences added to his quality of life... and, while it may not be exactly the same, I try to remember that the meds also add to his quality of life.

Tess, mom to S
Diagnosed May 2011

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
03-28-2018, 10:21 PM   #6
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter was diagnosed at age 12.5. Her height had dropped from the 97th percentile to the 50th percentile in the years before her diagnosis. She's been on Remicade and methotrexate for the past 3.5 years, and has gained 60 pounds and grown 6 inches in that time, going back up to the 92nd percentile for height. We have hated that she needs to take these meds, but are so grateful that they allowed her body and brain to grow.

My daughter's GI is actually quite conservative with drugs; she's always looking to reduce dose or even drop medicines when possible. She also encourages EEN before using prednisone and actively follows research about diets such as SCD. After E had reached remission, her doctor encouraged us to try dropping methotrexate. We tried it, and unfortunately E flared and we had to add it back. Her doctor has never even considered dropping Remicade, though, because of the likely formation of antibodies after going off it.

I hope that it doesn't feel like we're all piling on to you in our responses. I totally get where you're coming from, and I wish that I had a more optimistic answer for you.
Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, 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, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
04-09-2018, 02:18 PM   #7
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Join Date: Mar 2012
Location: California

My Support Groups:
Echoing all the above:

- Biologics (REmicade and Humor specifically) have been studied for years and have an excellent track record wit catch up growth and growth in general
- be wary of stopping a biologic to try something else. If "something else" doesn't work you may not be able to come back to it.
- stepping down the ladder brings you to immunomodulators, Imuran and Methotrexate. Their risk and side effect profiles are actually less appealing than the biologics and their success rate is less. Most sed GI's won't use Imuran with teens boys due to the risk of Hepatosplenic T cell Lymphoma and a lot of GI's won't even use them with girls anymore.

I researched the heck out of more natural treatments. We went to world renown functional medicine docs (they were MD's practicing functional medicine) and D.O.'s and natural paths. All said the meds were necessary but that they could help with supporting the meds and helping make the rest of the body the healthiest it could be to combat the effects of the med...think liver here.

If you want to explore a milder treatment, the only thing I am aware of is diet and enteral nutrition. Enteral nutrition has an excellent track record with getting kids to remission. 6-8 weeks formula and water only then slow reintroduction of specific diet of food. The problem is most people experience an increase in inflammation once they get to a certain level of food. For my daughter that was 20%. Some centers will let you do exclusive and live long term on 80% formula 20% food from the SCD or IBD Aid diet. Some cycle on and off after the induction period they will do a month EEN and then a month of SCD or IBD Aid diet. Not a lot of people are successful but there has been one parent her Optimistic who had a son who was successful with this. She isn't around a lot but perhaps she will get the page and chime in. You could also look up her threads and see if there is any wisdom in there.

Off the top of my head I know CHOP does a lot with EEN/diet and Seattle. MY daughters are seen at Stanford. They are open to diet/EEN treatment but not so much for moderate to severe disease. If your child was dx'd younger than 18, needed steroids, was hospitalized, needed biologics they are moderate.

There is a lot of research on diet/EEN. I know the Improve Care Now network has a study going on of which Stanford is participating but I think you have to live near a participating center. I am not sure if they are still recruiting. But keep in mind, if accepted no guarantee you would be assigned to the diet cohort and if you were you would have to take the risk of dropping your med.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet

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