Question about Elemental and Dairy
For those of you whose children avoid dairy or corn products... do the kids tolerate elemental formulas that contain whey protein or maltodextrin (corn)?Which formulas are non-dairy? LindaC
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Re: Question about Elemental and Dairy
My son got well on Modulen IBD (which, unfortunately is not available here anymore)that contains corn syrup, casein, sugar, milk fat... He is tolerating now Nutren that also contains corn syrup solids calcium-potassium caseinate, maltodextrin, carragginan... He tried recently Ensure Plus that also contains corn maltodextrin, whey protein concentrate
and carragginan and felt that that shake caused some discomfort for him.
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Re: Elemental diet
My son has been on exclusive and partial elemental for over 22 month now. For the first 5 month he received the nutrition via NG tube and then he decided to drink it instead. Prior starting enteral nutrition he was very malnourished, had stomach and joint pain. After several days on exclusive elemental his symptoms got much better and he started to gain weight back. Now he feels and looks good. But for him foods cause problems – enteral nutrition brings his health back on truck but he can tolerate VERY limited choses of food so far. As Sherie's daughter he was unfortunate to be forced to switch from the original formula (Modulen) to a different one since Modulen is not available in the US anymore. So, he tried several different
formulas and decided to stick to Nutren 2.0 (500 calories in a can). His labs were good and we started new reintroduction of foods. Then, once again, he developed pains and nausea on top of that. His SED rate went up and he is now drinking Nutren 1.0
(250 cal. in a can), some days he eats just one gluten-free waffle some days he doesn't eat at all – I let him decide – and he feels better again. After the course of exclusive elemental it is tricky for some people to figure out which foods are good for the system and which are causing inflammation. I'd like to point out that I too was looking out for more or less tasty flavor of the formula but if I would ever be in the same position again I'll probably go after the research. I 100% agree with Sherie on the ability of the person to get used to a flavor with time. As I said to my son – some people drink all kind of stuff – plain dark coffee, fresh lemon juice, smelly tea, dry wine – and they love the taste, but other people will say that they are crazy. They are not crazy, one day they just got used to it and another day they grew to love it.
So, good luck to your son on the road to wellness.
Svetlana (Steve, 11, CD, Dx 03/06, Pentasa 1000 mg, Nutren, vitamins, herbs, Iron, Probiotics, Omega oils, Seacure)
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Svetlana--Glad to hear you have also made progress on switching formulas. I don't really look forward to having to do that again anytime soon  I will have to take a look at the Nutren. 500 calories a can sounds like a lot, but boy it would be great to get those extra calories, huh? We are using the same combo as Ellen's boys. Adding in the 1.5 (375 calories a can) has helped. We've jumped from between 700-800/900 max calories a day (can you believe that was all she was doing?)to about 1250 and hopefully we can go up from there. Hoping we start to see some weight gain and growth--but if her labs are an "accurate" picture, we may finally have some healing going on and I'll gladly take that for now! Hope that you are able to make some headway on the food. So far we have egg, pears, salmon, banana, avocado, potato, chicken?, turkey? We haven't been quite as disciplined as I'd like in trialing these, but she has been having them without any noticable problems. Keep us updated on how things are going for Steve.
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Sherie,
I'm very exited about I.'s lab results!
Finally after all this time she is getting better and started to tolerate more foods.
Steve had a flare after introducing eggs (he felt better on egg whites, which might cause allergic reaction, and when we started to give him the whole egg he developed pains). This time I blame plane organic potatoes for a flare. From the previous experience I noticed that Steve tolerated turkey better and chicken caused pain (but again, I remember that chicken broth didn't agree well with I. before too, right?).
Oh, well, I still look at the situation with the optimism. It's a hard road for Steve, not to be able to eat, but he still sticks with the formula and knows that it makes him well (even though he has tantrums about it once in a while). Karina's and Ellen's boys experiences are what's make me optimistic :-)
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Well I'm hoping to draw on your successes. My 8 year old is barely eating, and I think we are going to have a long time of formula and little food. We took him off chocolate, on which he got bad labs, but he told me today he thinks the dairy is hurting him too. Dear Lord, all food can't hurt him can it? He gets labs redrawn March 3rd and if they aren't better again, I think we will go back to no food (heck, he's gotten himself half way back there already). His tummy was bothering him tonight, and can you believe I am hoping he wakes with the flu that's running rampant around here? In any event, he is doing great overall -- 3 soccer practices and a sleepover scheduled for this week alone. But I wouldn't mind getting him on the ordely food reintro his brother had. Best to all, Ellen
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Ellen,I can't recall, is your younger son on 6-MP as well? Yes, this food reintro is a big pain in the neck. I've read on several occasions that some people are able to eat almost everything after a course of exclusive elemental. I guess in our situations some part of the chain is missing. Or, maybe, as Karina said once, that sometimes it might take a long while for some to really heal (she was herself on elemental from age 8 'till 12 I think, and then was able to eat). By the way, who
knows where Karina is, I haven't seen her posts for a while? In your 8 y.o. case – at least it's maybe a little bit comforting to know that he is not morally suffering Good luck to you. P.S. Ellen, and how are you feeling?
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My post disappeared. Too tired tonight, but will try again tomorrow. Thanks for asking.  Ellen
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We've used both partial elemental diet (where you eat some food also) and exclusive elemental diet (no food) with great results. Our results have been much better on the exclusive than the partial, but the partial has worked at times too. With any elemental diet it just takes a while to get used to taste. My kids both drink Peptamen of various varieties. The food allegist we went to tells me 90% of the kids they take off of food for allergies drink the elemental. Just be sure to get flavor packets. Also, if you are still eating foods, you can add in things like Hershey's syrup. Sherrie's daughter drinks unflavored, but she's a rock star. Wishing you much success with this! My 8 year old went on exclusive this August and has now gained 10 pounds (as contrasted with 0 for the 9 months before that). Hope you all get some growth over there too. Ellen
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Actually we do flavor it using orange extract. Here's the link.
http://tinyurl.com/382nt6
We did have lots of struggles with this when we switched to the new formula and I am fairly certain it would have been a lot easier if I would use the Nestle flavor packs--she likes the orange. I personally wasn't happy with the ingredients so I decided we would need to go plain or find something else. I know many will not agree with me, but I couldn't bring myself to give her something I didn't believe was in her best interest to have. Now she is quite fine with it proving that after so many times of exposing a person, they do get used to something. In the meantime, I did resort to bribery and hypnosis to help her. As an FYI, my daughter has been on formula for almost 3 years now, but we recently had to switch formulas. She was OK with the idea of formula in general, but had a VERY hard time switching from the one she was used to. I would suggest that if you think you might go exclusive, that you not start flavoring with Hershey's as it will be very hard to pull that out later. Go with something you can use long-term (of course long term meaning 8-12 weeks, not 3 years!)Good luck--from the stubborn, mean mom
Sherrie
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This extract looks yummy. I think you're right that it's best to do as little as you need to make the stuff taste okay. We always went kicking and screaming and trying the least we could do at every point. Maybe not as good a strategy as yours, but then I'm stubborn and mean but not quite as disciplined as you. Best, Ellen
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There is no room for two stubborn, mean moms. Your kids are proof that whatever you are doing is working--so there should be no worries on your end!
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Thanks for the info! How long was your 8 year old on exclusive? Was it the full 8 weeks?
I pick up the samples tomorrow from the GI's office. My son will start on 2 - 3 cans a day, along with food. He is off all dairy, and all corn products.
Here's hoping to see some weight, and growth!! I'll do anything to avoid adding more meds. He doesn't seem to respond well to anything. Remicade was the magic bullet for about 18 months, then stopped working. Humira has been so so.Again, thank you for your input.
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