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Old 09-21-2006, 12:41 PM #11
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When I was purely/mostly tube-feeding (as a teenager), I went through lots of different brands of feed before we hit on one that worked for me (and that was without drinking them - with some of them for some reason I didn't even start to digest within 6 hours).

Good luck with the trials!
Swift
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Old 09-21-2006, 12:50 PM #12
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Kamie,

Anytime you have a food you suspect of causing an allergic reaction, the first thing you want to do is remove all traces of that food from the diet for 4 - 6 weeks to see if there is improvement.

If there is no improvement and you have been rigid about the food, the food wasn't the cause of the problem.

If there was improvement, you want to "test" the theory to make sure that food was the culprit and not a fluky coincidence.

The only time you wouldn't want to do this would be if the "test" aka trial could cause a life threatening type of reaction.

The way you would perform the trial would be to provide the suspect food "an 8 ounce glass of milk" 3 times a day for 4 days in a row. Don't introduce any other milk product foods during that time, just the milk.

If there is no reaction after 4 days, milk was not the issue. If, however, the reaction returns within the 4 days, you know milk was the issue.

In my case, I didn't make it through the first day without experiencing a reaction when I did my milk trial.

Food trials are a bit on the same philosophy as how we introduce new foods to a young child. You go slow and introduce one at a time for 4 days before going to the next food.
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Old 09-21-2006, 01:27 PM #13
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Quote:
Originally Posted by Kamie View Post
Harry's Farmers Market near the Big Chicken on Roswell Road in Marietta.
Been awhile since I've heard directions given in reference to the Big Chicken. Hee! Oh, and it's really nice to know there's a Whole Foods in Atlanta! My in-laws are in Kennesaw. Not sure when we'll be heading back that way.

Kamie, when we did Tom's dairy trial, I didn't know all that Bec just told you. I took Tom off dairy for 8 weeks (he had withdrawal seizures at 2 weeks, so I thought it was a failure at first). On a Saturday (and Claire's birthday), I fed him skim milk and doughnuts (most doughnuts have milk) for breakfast. He was soooo hyper, but we blamed the doughnuts. I did give him regular milk at each meal. Sunday, we were too busy getting things ready for Claire's party, so I really don't know how he was. Monday, he went to spec ed preschool. When I picked him up, the first words out of the teacher's mouth were, "What did you give him?" He couldn't sit still for them, he was knocking puzzles and toys on the floor, he was out of control for his normal behavior. To be honest, it took me a minute or two to figure out that we had given him milk over the weekend (and some for breakfast that day). It took 3 days for him to calm back down.

The last time that I know he had a small amount of milk (a bite or two of a rice crispy treat, so not a lot), I didn't notice any reaction. Whether *he* noticed a buzz or not, I don't know. But, going dairy free made the most difference in his seizure control and I have no intention of messing around with milk.
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Old 09-21-2006, 01:33 PM #14
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There are a TON of whole foods in Atlanta. I just wish we could get one in Newnan. Le sigh. Eventually.
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Old 09-21-2006, 01:36 PM #15
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Quote:
Originally Posted by Kamie View Post
There are a TON of whole foods in Atlanta. I just wish we could get one in Newnan. Le sigh. Eventually.
Any in Augusta? My folks are there.... I guess I could probably ask them.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
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Old 03-10-2008, 04:25 PM #16
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Quote:
Originally Posted by swift View Post
When I was purely/mostly tube-feeding (as a teenager), I went through lots of different brands of feed before we hit on one that worked for me (and that was without drinking them - with some of them for some reason I didn't even start to digest within 6 hours).

Good luck with the trials!
Swift

that is the exact problem my 22mo daughter is having. It is all through g-tube but is staying undigested. When I tell the Dr. this he says that because she does great with breast milk or formula that it can't be her being allergic to the pediasure. She is covered in mucus and throws up can't take bolus feedings with the ped but formula she she clears up and is well and developes. We have been going through this for over 6mo were at times she was so sick i thought she was going to die. I have only connected this in the last 2 weeks although i told the dr. i thought this was a posability over 6mo ago. do you have any ideas i know someone her age needs more noutritionally than formula. can you tell me what was finally done for you. sorry about the rambling i am so excited to see my daughter well and need to know how to get the dr. to believe this IS the problem. I haven't seen her smile or laugh in so long till now and i just want it to keep going.
PLEASE give me any info you can we see him on friday
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Old 03-15-2008, 09:43 AM #17
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BMillerpony...

Hello and WELCOME to Neurotalk!!

I'm sorry that no one has answered your question... This is an old thread and it doesn't appear that the people who started it haven't posted anywhere here on Neurotalk in months.


You may want to introduce yourself over on the New Member Introductions forum... (just click on the blue words it will take you there)

Repost your question--Someone over there may be able to help you out or direct you to some one that can help you.

I truly wish you the best.

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Old 03-16-2008, 02:10 PM #18
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Hi, Bmillerpony! Welcome to NeuroTalk!
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Old 03-16-2008, 03:22 PM #19
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HI Bmillerpony,

I wonder if MrsD might be able to help you answer your question. I will copy your post to the vitamins section where she often reads.


the link to the copied post on Vitamin forum-
http://neurotalk.psychcentral.com/sh...668#post238668

Last edited by Jomar; 03-16-2008 at 11:57 PM.
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Old 03-28-2008, 11:54 AM #20
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Quote:
Originally Posted by bmillerpony View Post
that is the exact problem my 22mo daughter is having. It is all through g-tube but is staying undigested. When I tell the Dr. this he says that because she does great with breast milk or formula that it can't be her being allergic to the pediasure. She is covered in mucus and throws up can't take bolus feedings with the ped but formula she she clears up and is well and developes. We have been going through this for over 6mo were at times she was so sick i thought she was going to die. I have only connected this in the last 2 weeks although i told the dr. i thought this was a posability over 6mo ago. do you have any ideas i know someone her age needs more noutritionally than formula. can you tell me what was finally done for you. sorry about the rambling i am so excited to see my daughter well and need to know how to get the dr. to believe this IS the problem. I haven't seen her smile or laugh in so long till now and i just want it to keep going.
PLEASE give me any info you can we see him on friday
(((Hugs))) I'm sorry your daughter is having problems. Are you familiar with the allergy bucket theory? I don't have a good definition, but I can give you an example. Suppose you're allergic to cats and pine pollen. You can go visit your friend with the cat for an hour before you really need to leave the house. But, if it's pollen season, you can only stay for a half hour before you need to go. And, if you have a cold on top of that, you probably wouldn't bother visiting her at all. The idea is that you can handle so much of an allergen before you start having problems. If you throw in some other allergens, your bucket fills faster.

Anyway, if you go back to my first post on this thread (post #6), that's what I'm getting at with the ratio of whey to casein. Perhaps the extra casein in the pediasure is tipping the bucket for your daughter? There's not enough casein in the formula to fill her bucket? Of course, it could be a completely different ingredient in the Pediasure that's bothering her.

My son is not tubefed, so I don't have any experience with it. However, we've had a couple of recent discussions over on Brain Talk about blended food diets / blenderized diets for tube fed kids. That's one way to help your daughter get more nutrition in her diet with less worries about food allergies. If you're worried about dairy or any other allergens, you can leave it out of her diet.

My other suggestion is to try a different meal-replacer. (Sorry, I know Pediasure is not a formula...I'm drawing a blank at what to call it.) See if you can find a non-dairy-based meal replacer to try. In formulas, there are soy-based formulas as well as dairy-based. Unfortunately, soy is also pretty high on the allergen scale (one of the US top eight, just like dairy), but it might not be a problem for your daughter.

Hope this helps. I'll pop back in a few times to see if you have any questions for me. So... what did your doctor say?
Quote:
Originally Posted by Abasaki View Post
I'm sorry that no one has answered your question... This is an old thread and it doesn't appear that the people who started it haven't posted anywhere here on Neurotalk in months.
Hee! It says I haven't been here since Jan 6. But, you're right. I don't visit here very often any more.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.

Last edited by Curious; 04-12-2008 at 10:07 AM. Reason: mod edit per nt guidlines re forum links
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