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Forum: Children with Special Needs


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December 20th, 2011, 03:12 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
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This seems ridiculous to me but I want to ask anyway... Danny now has 15 food allergies. Eggs, milk, soy, tomatoes, carrots, red 40, cinnamon, tree nuts, strawberries, rice, coconut, lamb, apples, and now chicken, and wheat were added yesterday. He has so many things to avoid that I am getting really worried about meeting his nutritional needs. Most substitutes for things he can't have are made of or contain other things that he is allergic to and with adding wheat and chicken has made this problem so much worse, wheat mostly. The most common substitutes for wheat are soy and rice flour...both of which he is allergic to. I am just getting to the point that I am trying to figure out how to feed him. We aren't taking wheat out just yet so that we can adjust to the chicken being out...a major staple in his diet up to this point. Then in a month we will be reconsidering the wheat and when to take it out and how to go about it.

So to the point and the question. Is there a point that a feeding tube is necessary to meet the nutritional needs of a child simply due to food allergies? I am afraid to ask his doctors because it seems so extreme to me but I really am clueless as of how to feed him once we take out wheat.

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December 20th, 2011, 09:17 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
Posts: 1,953
I have multiple food allergies myself but nothing like that. Mine are all pretty easy to avoid. I can’t imagine how hard it must be for you to feed him.

I don’t know much about tube feeding but wouldn’t the formulas most likely have ingredients he’s allergic to? Maybe before going that route you should look for a nutritionist/dietitian or a naturopathic doctor who specializes in children with food allergies. They could help you develop a personalized meal plan for him. I worked with a nutritionist when I was first diagnosed as a teen. It was really helpful.

I hope you can figure something out soon. Good luck.

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December 21st, 2011, 05:39 AM
challowell's Avatar Mega Super Mommy
Join Date: May 2010
Location: Caldwell, Ohio
Posts: 2,173
I Think they can make breads and milk out of oatmeal if that is any help. I can tell you from working around tube feeds all the ones I have seen contain milk, soy, and usually there is amix of both. I do not think a tube feed would help him. HUGS
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December 21st, 2011, 08:07 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
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Oh yes! I know many children with EoE that have to be on elemental formula through a feeding tube. So many people are scared of tubes but they help so much. Ava's tube saves her life daily.

When you went to Cincinnati, did they say he didn't have EoE?

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December 21st, 2011, 04:24 PM
greenchild's Avatar Platinum Supermommy
Join Date: Jul 2006
Location: MN
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we do the paleo diet, which is no processed foods, dairy, no grains, no legumes, no nightshades, and we already avoid all on Danny's list except chicken, lamb, cinnamon, and coconut/tree nuts.

Danny can't have chicken or lamb - is he okay with beef, pork, turkey, duck, fish, or other seafood?

No treenuts, includes coconut - are avacadoes okay or are they considered a treenut (I don't know the answer to that )

There's tons of veggies and fruits out there. Kaiden can eventually have most fruits but some we avoid right now since they give him diaper rash - apples, pears, all citrus, plums, cranberries, ALL fruit juices. Interestingly enough, peaches HELP with this diaper rash business (makes the urine more neutral). So he eats different berries, grapes, bananas, pomegranates, melons, etc.

With paleo, we avoid string beans, peas, corn, tomatoes, potatoes, peppers . . . but he can eat leafy greens, parsnips, rutabaga, turnips, all summer and winter squashes, cucumbers, radishes, asparagus, etc.

Once you have your list of things to avoid, it's really just a matter of really looking thru the produce dept at the supermarket.

If you have any questions, feel free to PM me
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December 21st, 2011, 07:18 PM
C&K'sMama's Avatar Platinum Supermommy
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The ladies have had great advice. I would ask you doctor (at the very least) about finding nutritional supplements of some kind. They have to have some vitamin or pedia-sure kind of thing for Children with multiple food allergies.

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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December 21st, 2011, 09:31 PM
Mega Super Mommy
Join Date: Jun 2007
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In regards to formula...he tolerated elecare but hated the taste so much that even small amounts made it to where he would gag and almost throw up after taking it. That would be solved by tube feeds.

EoE...tested SEVERAL times...all 100% negative.

Fruits...all of them give him diarrhea (sp?) except apples and bananas, thus he can only have bananas. He gets dried berries and seems to tolerate those but that is it.

Nutritionists are all stumped. They have no idea what to do other than what I am already doing.

Naturopath-Made things a TON worse...naturopathy is techincally illegal in TN and I only found 2...this one came highly recommended but with Danny's complex issues, by helping one thing he threw everything else completely out of wack. It took MONTHS to get it back in order. Sadly...I will not go that route again.

Avacadoes-he HATES them.

Veggies-he likes corn and occasionally he will eat green beans...that is about it.

It isn't so much of a what can I feed him but more of a what can I feed him that he is also willing to eat and that will meet his nutritional needs. Until we have to take wheat out I am pretty much good. We are working with lunchmeats now as he will eat lunchmeat ham and turkey but not "real" ham and turikey. He hates beef and the lunchmeat varieties I have found have soy protein in them. He is on a liberal bland diet due to his GI issues which means no meat "stuffs (broth, consomme, gravy), no citrus of any kind, no spicy things, no caffeine, no chocolate, etc. So basically he is CRAZY restricted beyond his food allergies... He drinks oat milk but all the breads that we used to use when we had to try gluten free a few years ago were nut, soy, or rice flour based or contained one of his allergens at that time...and he has added a good 10 more since then...

ETA: Most kids with tree nut allergies are fine with coconut.. Danny's coconut isn't ANA like the tree nuts are but we still have to avoid it.

Elecare is an elemental medical food for children with multiple food allergies. Danny was on it for a while but the above made it completely counter productive. We tried every way we could think of to flavor it and it just didn't work.

He gets 2000-2500 calories per day right now and at his last weight check he had only gained 2 ounces in the past month...basically that means he hadn't gone to the bathroom yet. That combined with now cutting a drastic portion of his diet out seems like it is going to end in disaster unless we find a way to avoid that...

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December 22nd, 2011, 06:17 PM
~LaurenNoel~'s Avatar Platinum Supermommy
Join Date: Mar 2009
Location: Florida
Posts: 7,909
I don't have advice, just *hugs*. Wesley would barely eat, and nothing that he was supposed to eat for the GERD, so I know how frustrating that can be. He's 100% tube-fed now on Elecare Jr. He has EE though, bad.
///...........................Lauren, wife to Jay, mom to Wesley and Ruby


................ ...

Wesley (7.16.09) Severe GERD, FTT, Gastroparesis, Sensory Processing issues, Tube fed, (G tube currently), suspected Mitochondrial Disease, trialing Gastric Stimulator. Nissen Fundoplication 7/2012
Ruby (2.16.11)
Nissen Fundoplication and Hiatal hernia repair 10/25/11
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