From Peptamen to SCD

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Amy2

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Mar 22, 2013
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In less than 3 weeks, my son will be going from Peptamen to SCD and I would appreciate any advice from parents have done this.

He's drinking eight Peptamen a day and I was wondering how fast to wean him off of them, replacing those calories with legal foods?

Did you do it with or without drugs?

Any info appreciated! :)
 
When my son came off the Modulen we were given a sheet of advice on what to introduce when. It might be worth speaking to a dietician to get some advice. I know it took about a week before he was completely off the drinks. Started with just a couple snack type meals then built up every couple days. I would let him drink as much of the Peptamen as he feels he needs until the food builds up. We came off without meds, but needed them afterwards.
 
O phased in one or two foods a week over 3 or 4 weeks and then transitioned to full food. Our dietician helped us determine which foods to add each week and she tried to base it on what O was missing the most.

As for SCD, in additiion to the info here and the book there was a dad here who had a separate website dedicated to the treatment he used with his daughter (SCD and supplementation etc) and various research etc. He has since passed away but the site is still up and I think his daughter is trying to keep it updated and people are still posting etc. You may want to check it out. It is crohnsdad.

Good Luck!
 
We tried a SCD/Paleo/FODMAP diet. Truthfully I can't remember which we followed more closely but I think it was a bit of a combo. Didn't have any success with the diets but it could be argued that we didn't follow them closely.

I really liked the SCD cookbook called The Everyday Grain Free Gourmet by Jodi Bager and Jenny Lass. I also got quite a few ideas for meals, snacks, etc from The Paleo Mom's blog.

http://www.thepaleomom.com/

If I remember correctly some of the paleo rules can be tweaked slightly to make it SCD legal.
 
The nutritionist said today that when my son reaches the 6 week mark, he can have 25% food, wait 3 days, then go to 50% food if he's feeling well. That seems so fast. I think we'll stay at 25% for at least a week.
 
Hope the transition goes well. We went from total EN to full food within a week - but then my son was desperate to get rid of his NG tube. Would probably be better a bit slower!
 
Began tapering Peptamen May 6.

Now eating lots of organic eggs, yogurt, applesauce, smoothies, honey, cheddar cheese, avocado, bananas, zucchini "pasta" with marinara, pineapple, watermelon, cantaloupe, almond butter and vegetable broth.

Have 3 cases of Peptamen sitting in my pantry, just in case we need to go back to it.
 
Awesome!

Question for you - has your GI okay'd pineapple? It is such a fibrous acidic fruit - we were banned from all acid fruits. So I was just curious. We lived in Hawaii for many years and it was always one of my favorite fruits to have, but eating too much could cause a rash around my mouth - acid burn my Mum would say... (I'm not the IBDer, my son is.)

Thanks!
 
My son's GI hasn't shown a preference for one type of food over another, but he and the nutritionist know that my son is following the SCD. My son is only eating organic canned pineapple at this point, but the watermelon he ate was raw and he ate a lot of it.

Everything my son is eating is organic and I was actually glad that he didn't like the dry curd cottage cheese because I couldn't find that organic.

Before diagnosis, my son was a vegetarian who ate a lot of pasta and bread products and I am HOPING that was the problem for him, as it seems to have been for my daughter. Now, he's a vegetarian who eats a lot of eggs, yogurt and fresh fruit.

Only thing that he's had trouble with so far was string beans. They went right through.
 
Stephen eats pineapple without problem... :) But, he never eats TONS of it at one time... ie, one cup tops...
 
Amy2 said:
Before diagnosis, my son was a vegetarian who ate a lot of pasta and bread products and I am HOPING that was the problem for him, as it seems to have been for my daughter. Now, he's a vegetarian who eats a lot of eggs, yogurt and fresh fruit.
Click to expand...

Interesting.. my son wasn't a vegetarian before diagnoses, but he was my veggie loving child. He's not a big sweet eater so afternoon snacks had always been raw carrots, cucumbers, salads, etc... But all of that was banned by our GI and nutritionist. It was HUGE blow to his eating habits... now he's my pasta, bread eating kid - go figure!? ::yrolleyes:
 
my son's GI has't banned any food... said that he can eat what he wants.. he's a big fruit eater and his favorite food is corn on the cob (I know.. I know..). Now that he's been on EN (not exclusive) for the past 5 weeks, he's feeling great, has gained almost 2 lbs (HUGE for him.. he only gained one lb in the last 2 years) and eats what he wants, when he wants.. granted, it's not a lot of food but he doesn't have any pain or anything.

I'm meeting with his GI end of week to discuss LDN vs MTX vs?? Should be interesting conversation! LOL
 
Weight: 105.6 lbs tonight. He's going the right way again. It is so weird how he didn't gain any weight when he was drinking only Peptamen because he was taking in about the same number of calories.
 
I thought it was more important that my son get into remission, than gain weight, esp since he'd already put on 20 lbs. I saw EEN as our best chance. We always kept his doctor informed about what we were doing and I credit him with getting my son over a scary, mental hurdle, shortly after we came home from the hospital. He seems to be a very kind and compassionate person. :)
 
The thing to keep in mind is regardless of pred or EEN your child typically does not gain weight until some healing begins .
With pred alot of the "weight" is just fluid retention and is lost when pred stops.
With EEN once the healing is complete then weight is put on- this tends to occur at the same time as food is reintroduced since most are not staying EEN for life ;)
 
my little penguin said:
The thing to keep in mind is regardless of pred or EEN your child typically does not gain weight until some healing begins .
With pred alot of the "weight" is just fluid retention and is lost when pred stops.
With EEN once the healing is complete then weight is put on- this tends to occur at the same time as food is reintroduced since most are not staying EEN for life ;)
Click to expand...

I've wondered if this is true of Periactin as well. My daughter is able to put on 3-4 lbs. within a week of starting it but loses 3-4 lbs. within a few days of stopping it. Doesn't seem like she has gained "true weight" to me.....if that makes any sense.....
 

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