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Crohn's Disease Forum » Parents of Kids with IBD » From Peptamen to Solid Food

04-17-2013, 12:10 PM   #1
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From Peptamen to Solid Food

For parents with experience, please share. How fast did you make the switch back to solid food? What were the results? Were there any bumps in the road? What drugs did your child take and were they weaned off of them, also?

I would like to drop one a week and have my son off Peptamen in 8 weeks (from starting date) should he continue to gain weight and feel well. We will be trying the SCD 100%.

What is the typical protocol and time frame for stopping EN?
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
04-17-2013, 04:25 PM   #2
my little penguin
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talk to your gi but most stay on EEN for the full 8 weeks then slowly wean off EEN to PEN ( if there are other dietary restrictions) which can take another 4 weeks.

YOur GI should be really telling you when it is "ok" for him to stop EN and how- since every GI has a different "plan"

my child took een for 9 weeks.
we then dropped from 7 shakes a day to 6 for a week adding in soft easy to digest foods.
after 5 days then well cooked veggies/dairy with 5 shakes.
last we added meat ( which was very hard to chew) and 4 shakes a day.

he had lots of stomach pain at first. He was on 6-mp from the beginning of EEN.
We did wean down to 1/4 dose 6-mp for a week in order to add allopurinol .
Within 4-5 days he was a complete mess.

My son is still on 2-3 peptamen jr a day and will remain on it until he is finished growing.
He is currently on Remicade and will move to HUmira next week.

WE tried having him corn , soy, dairy, FOMAP , wheat, etc... free - for him it did not make any difference in symptoms ( this was while on meds that were not working enough)
Our hope was to give them a "boost"
no such luck-

hope things go well with your child.
just make sure you have a plan "b" in the back ground with the GI
since if he goes down hill it could be fast and the lower drugs (6-mp, aza, Imuran)
take 3-6 months to works.

good luck
DS - -Crohn's -Stelara -mtx-IVIG
04-17-2013, 08:28 PM   #3
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Join Date: Jan 2013
Location: North Central, Illinois

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We haven't really talked about a plan of getting off her supplements. She is 2 weeks into eating solids, but it is slow going adding the extra foods. Personally, I think she does a lot better overall with the nutritional supplements. Better than with food, so I'm not in a hurry to get her back to a regular diet. We are doing slow additions to new foods and keeping a food journal. She is very underweight, but with the current regimen she is gaining 2-3 pounds a week. In another week she may actually be on the growth chart. We started 6-MP about 3 weeks ago. She did not have other meds prior.
J's story:
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. 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.
04-17-2013, 09:30 PM   #4
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We can't keep doing en forever. Not at $64 a day. When we began, there was no mention of cost, and we assumed our insurance would cover it, then it was $25 a day, then $55. And we were told it would be 6 weeks, then 2 months, then 3. Now it seems endless? Some of the docs at the hospital said he could have food, others said no.

Our dr hasn't talked about plan B but casually mentioned that he wants my son to stay on 80% Peptamen and it interferes with the SCD, so that isn't going to work.
04-17-2013, 09:43 PM   #5
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Join Date: Jun 2011
Location: Ontario

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Is there any agency (city, regional, etc) that can help with the cost? Our insurance didn't cover it either but a regional care assistance agency has covered the cost.

My son was on EEN for six weeks while we reintroduced he tapered the EN to half his dose and has stayed with it at this level (1500 cal/day, 5 days/week).

I recently posted Stephens reintro diet on carolinalaska 's thread. Sorry, just on my bb now, and I'm just not tech savvy enough to cut and paste here.

But I agree with MLP, try to speak with the GI and get a firm plan for your son.
Tess, mom to S, 22
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
04-17-2013, 09:50 PM   #6
my little penguin
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If you want SCD then you really need to tell your GI and discuss it with him on how that would work. It sounds like you have not discussed the SCD plan with your GI.
EVen if your GI does not agree they really need to know what is being given or not given in this case so that all risks for your son's case can be discussed and a joint decision can be made.

if cost is the only deciding factor on EN ( all be it not small by any means) then you also need to tell your GI. There is supplemental insurance for kids especially kids with ibd that may help defer the cost . Please look into it. Some are not need based but dx based.most insurance have a durable medical equipment clause- which means the insurance does not cover formula but does cover infusion therapy supplies (aka formula).
If you search there is more than one thread on here about covering formula cost and the various help groups out there.

I little confused you state some docs at the hospital said food was ok and other not- were they all your GI's or different departments. I would discuss your concerns with the GI who is primarily handling your son's case. Your doc may be able to provide an explanation and knows your son's current history and needs.

As far as endless EN - when you chose to use EEN in lieu of other maintenance meds that would be probably be the "why" again not sure - so ask your doc.
04-17-2013, 10:26 PM   #7
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Day 1 we were told by the GI on duty my son could have food, then the dietition said no, then another GI said "maybe a banana if he's really hungry", then we went home with final instructions not to eat, but on day 3 when my son was feeling weak and depressed, his GI said that he could eat 20% food, which we did for a couple of weeks...We went against our GI's advice and stopped food like 22 days ago (he reluctantly agreed). He doesn't seem to know much about SCD.

We're still working on our insurance company...

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