Crohn's Disease Forum » Parents of Kids with IBD » Help do the Doctors know what they are doing

06-10-2013, 02:18 PM   #1
Join Date: Jun 2013
Location: Ramsgate, United Kingdom
Help do the Doctors know what they are doing

Hi, both my children have crohn's my daughter has had it from the age of 17 she is now 28 and my son from the age of 8 he is now only 13. With my son all the doctors can put him on is steroids as the few other treatments have been unsuccesful. He is not growing as he should due to the amount of steroids he has had to take. Does anyone know of an alternatives, when he takes the steroids it helps the symptoms and makes him hungry, but once he comes off them he has no appertite Help
06-10-2013, 02:52 PM   #2
Forum Monitor
Clash's Avatar
Has your son tried enteral nutrition? It has a comparable success rate to steroids.

There are several members on here that have used EN, I'm going to tag them, Tesscorm, Jmrogers4, MLP, CarolinAlaska, and they'll be along shortly with their experience, I'm sure.

Here are some studies/info/threads on EN:

I hope you are able to find a treatment that will get your son into remission quickly! HUGS
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
06-10-2013, 03:24 PM   #3
Jmrogers4's Avatar
Welcome to the forum Waterbaby,
My son is 13 and we have been on supplemental EN since February. He was allowed other food in addition to the drinks, many have done total EN and done the drinks only nothing else which is good for remission but like steriods once you stop symptoms come back.
We were able to get Jack's symptoms for the most part under control through medicine first Imuran and now LDN.
The supplemental EN that he did was with an semi-elemental formula which has the proteins broken down farther making it easier for him to absorb. He did 8 weeks of 8 drinks a day. During that time he gained 23 lbs and grew almost 2". He had only gained about 5-8 pounds over the last 3 years prior to that and maybe gained about 1" in height. When we started on the drinks he was 5' and weighed 77 pounds.
He dropped down to 2-3 drinks a day after that to maintain weight. We are currently upping him back to 4 because he is not eating a lot otherwise and this way I'm sure of him getting the necessary calories and nutrition that a teenage boy needs.
I believe many in the UK use a formula called Modulen. I'm sure there are others.
Is he currently on any other medication or just steriods, what medicines have been tried?
Hope he gets to remission soon.

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

Husband dx Crohn's 3/1993
currently none due to liver issues
06-10-2013, 03:36 PM   #4
Senior Member
ChampsMom's Avatar
Join Date: Mar 2011
Location: North East Coast - USA

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Hey Waterbaby...

Sorry to hear about the problems you son is having... Clash and JmRogers4 have already given great advice and some information you can look into...

We do not have experience with EEN/EN, but it is an approach I would strongly consider if need be...

Good luck! I pray you get answers soon!

Mom of Champ (Alex)
Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
Priesthood Blessings
06-10-2013, 03:39 PM   #5
Senior Member
alex_chris's Avatar
Join Date: Apr 2013
Location: Frankfurt, Germany
Hey waterbaby, in addition to what posters have already said, what meds has your son been on since diagnosed? As you probably know there are a wide range of them, the most common are azathioprin or 6mp and the biologics (remicade, humira and cimzia). Have all those meds failed?
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
06-10-2013, 04:41 PM   #6
ccec213's Avatar
Join Date: Sep 2012
Location: Texas

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Hi Waterbaby,
There are TONS of other options, some better than others. When I was diagnosed I was ten and my town didn't have a good pediatric GI. He sounded similar to your son's: after the steroids failed, he was at a loss. For years we drove four hours to see a "big deal" doc at a huge teaching hospital. That had its pros and cons, but he knew faaaaar more options.

If your doctor only knows steroids, find a new doctor.

Also, most doctors only know drugs. Find a good doctor, but consider complementary approaches: enlist support from nutritionists, therapists, acupuncturists, anyone your son is willing and interested to see. In my experience, collecting different perspectives is empowering.

Good luck!

Caitlin/ late 20s/ Crohn's disease since age 10/ failed all Western meds, now forging the self-care wilderness.

Better Living Through Snark - My blog about chronic illness in short, insomnia-friendly bursts. (At least 20% written on painkillers! Guaranteed! )
06-10-2013, 09:47 PM   #7
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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Hi Waterbaby,

Sorry your son is having a tough time right now. I also recommend you look into enteral nutrition. When used 'exclusively' (ie, no food for a number of weeks, EN formula only), it does have comparable rates at inducing remission as do steroids. It's certainly a tough treatment to comply with but it has no side effects and will provide your son with all the necessary nutrition! Once the exclusive period ends, you can reintroduce foods while maintaining a level of supplemental EN (ie my son's supplemental dose was half the dose, 5 days per week while eating a regular diet).

Some of the formulas can be ingested orally (ie shakes), others are unpalatable and are ingested through NG tube (my son has done this for two years now, ingesting the formula through the tube overnight).

Here is a link to the Kids on EN thread - there is lots of info there as well as a link to the Enteral Nutrition section in the Treatment subforum.

While EN was the only treatment my son used for 18 months, it is not usually used as a maintenance treatment but it may help bridge the gap while waiting for a med to reach therapeutic levels.

Is your son on any other maintenance treatment?

Good luck!
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
06-11-2013, 12:23 AM   #8
Holding It Together
CarolinAlaska's Avatar
Join Date: Jan 2013
Location: North Central, Illinois

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Hi Waterbaby, my daughter was not growing or developing from her Crohn's either. She was diagnosed in December/January. The doc wanted to put her on prednisone, but the literature I read said that exclusive enteric nutrition was especially good for kids who were having difficulty gaining weight or getting into puberty. Since then she has gained 15 lbs with 8 weeks of exclusive enteral nutrition and drinking 1800-2300 calories of the formulas since then. It isn't an easy road but it is working for her. I also found out recently that her zinc was low which can make her anorexic (have no appetite) and can make food not taste good. We've just started her on that.

I hope you can find an answer for your son.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent 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.

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