Protien Intolerances, Allergies,Special Feeding & Reflux

Recovering from birth & months of Hyperemesis, encompassing post-partum concerns such as nutritional and physical recovery from HG, breastfeeding support, and infant medical issues stemming from HG (infant reflux, feeding issues, prematurity, etc.).

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Protien Intolerances, Allergies,Special Feeding & Reflux

Postby nomore » Apr 05, 2007 2:41 pm

Hi Ladies

WARNING: post full of FOODMENT

We seem to have a few resident "experts" on food allergies and protien intolerances and reflux. And, sadly we seem to have a bunch of babies (and sometimes Moms) that need to be on special diets due to these problems. I thought it might be a good idea to have one central thread where we can add a BUNCH of info to and then refer people to it if the need arises.

PLEASE NOTE: If you think either you or your child is experiencing allergies, protien intolerances or reflux, please contact and see your medical doctor. These links are to help you, but should not be used in place of professional medical treatment.

So, I am going to break this down into different sections, and this will be a work in progress. And of course please post info and it will be added to this post. :)

I thought we could add info from websites to get more help, to lists of "safe" foods (or ideas) for those of us struggling on what we can eat or feed our babies, to recipes, to just general advice and tips.

There are 2 different reasons to to avoid certains foods. One is an actual allergy (which can be confirmed by allergy testing) and one is a protien intolerance, which is typically outgrown some point in childhood. Also, some need to be on a gluten free diet due to Celiacs disease.

The most common foods people seem to avoid ARE:

MILK
SOY
WHEAT
EGG
CORN
NUTS
TREENUTS
SHELLFISH
RICE
OAT

Websites for additional info:

www.foodallergy.org

www.allergygrocer.com

Website for buying groceries, lots of recipes.

www.actagainstallergy.com

general allergy info but more geared to MSPI and multiple protein intolerances. Has some great links... and you can sign up for updates. The Clinical diary is free and great for recording how each day/feeding is going so that you can keep a record for the doctor.

http://www.childrenshospital.org/clinic ... 024P0.html

Boston Children's Hospital Center for Aero-Digestive Disorders... info for families on the disorders and also available to book consults if you want.



https://www.sickkids.on.ca/sfs_site/sho ... ervice.asp

Specialty Food Shop of the Toronto Sick Kids Hospital (home of Motherisk as well...). You can consult a Registered Dietician by e-mail or phone for suggestions and help... they can recommend "safe" foods to you depending on the allergy and needs.

http://www.kidswithfoodallergies.org/index.php

The name of the site is pretty explanatory! They have recipes... and under "marketplace" links to sellers of allergen-free foods.

http://www.foodallergykitchen.com/substitutions.asp

Not the greatest site, there is a cookbook for purchase; but I love the fact that they offer "substitutes" suggestions for pretty much all the major allergens.

http://www.allergyblock.com.au/recipes/default.asp

From our friends down under, one of the best organized and labelled recipe sites for multiple-allergen free recipes.



Food ideas:

List of Food Ideas for dealing with MSPI (milk/soy avoidance):

Right now I have some safe foods:
Cream of Wheat
Stacy's Pita Chips (Cinnamon Flavor)
Whole Wheat Pita Bread
Rice Dream Rice Milk (Vanilla and Chocolate Flavors)
Almond Milk (Chocolate Flavor)
Dole Frozen Fruit Bars

I love veggies and most fruit. I was struggling with a butter/margarine that was safe and I think I finally found one:
Fleischmann's Light Margarine
It's made with corn oil and the label says "pareve" for those that are Jewish so they know that it is dairy free (thanks Gracie!) It also does not have soybean oil in it.

Reading labels has become standard so that I can protect Aidan from the foods that cause his vomiting, spitting up, and a horrible diaper rash.

I am going to cut and paste some of the helpful information from the Life Forum where I started a thread on MSPI.

From Kendra:
Kroger items:
*Del Monte light peaches
Tastee Apple Chips (haven't tried them yet)
Corn Bitz (think Corn Chex)
Honey Go Rounds (think Honeycombs)
Stacy's Pita Chips, Simply Naked and Cinnamon varieties
Tostitos Natural corn tortilla chips
*Carr's Table Water Crackers (haven't tried them yet)
*Barilla mushroom & garlic pasta sauce
*Barilla tomato & basil pasta sauce
*Bertolli marinara with burgundy wine
*Grape Nuts
*Hunt's tomato sauce with basil, garlic & oregano
*RoTel milder diced tomatoes & green chilies
*Kitchen Basics natural chicken stock
La Tortilla Factory soft taco size tortillas - 100% fat free (other varieties are not milk/soy free)
Duffy's crumpets (found in refrigerated section)
*Kangaroo pita pocket bread - 100% whole wheat

Whole Foods items:
(some may be available elsewhere)
*365 Organic cinnamon graham crackers
365 BBQ potato chips
Nueva Cocina tortilla soup
Shelton's chicken tortilla soup
*Whole Pantry Sea Salt & Roseary Crostini (haven't yet tried)
variety of dried fruits from "Just Tomatoes"
*Shelton's turkey chili
365 All Natural Root Beer

From Gracie:
Grains: Infant cereals from Beechnut and Healthy Times; Rice Crispies, Cheerios, Shreddies, Shredded Wheat. Hot cereals prepared without milk: oatmeal, cream of wheat; Regular and whole-wheat pasta, white or brown rice; egg noodles; pita bread, english muffins, flour tortillas (wraps). There are brands of muffin mix that are soy and milk free (add oil that is not soy based and substitute juice or almond milk for the milk). Some crackers, bisuits, cookies are milk & soy free but the recipes change, so always check the ingredients. (Premium plus 5-grain were okay at last check...)

Milk products: Alimentum or Nutramigen, Lamb-base, Coconut milk, Almond milk, rice milk. Any desserts made from these.

Meats and alternatives: Lamb, pork, horse, wild game (moose, deer,...) poultry (non-basted)... turkey, chicken, quail, duck, goose. Sausages from any of these meats (verify ingredients); Fish and seafood (caution with flavored tuna and salmon in cans and with battered items); Ham, bacon, eggs

Veggies and Fruits: All fresh, canned, frozen. Dried fruits and juices. Potatoes without milk or butter. Many commercial soups (be careful of ingredient list that it is not a beef-based broth)

Fats and Miscellaneous: Margarines not containing milk or soy. Mayonnaise (check label). Many whipped topping substitutes, sugar, maple syrup, table or corn syrup, honey, molasses, fruit jellies/jams, marmalade

When reading labels avoid: beef, beef fat, butter, casein, cream, gelatin, lactalbumin, lactoserum, lecithin, milk, milk solids, veal, whey, tarrow, oleo, soy, soya, soy bean, soy bean curd, soy flour, soy granules, soy grits, soy isolate, soy lecithin, soy milk, soy oil, soy sauce, tempeh, tofu, miso, HPP (hydrogenated plant protein, TVP (textured vegetable protein), HVP (hydrogenated vegetable protein), Hydrogenated vegetable oil (if the source is unidentified)

TIPS: The word PAREVE or PARVE on the label means the item does not contain milk

Soy sauce substitute: 2 tsp molasses, 1 tsp hot water, 1/4 tsp salt

Dark chocolate is usually safe...

Also, in case you didn't know, Indian food (east indian) excludes cows (they are sacred and foods should not contain cow's milk either... but always double check and they may contain soy)

BTW... Rice Dream also makes very tasty (subjective I guess...) ice cream bars... or you can get plain vanilla and put fresh fruit or warmed jams over it.

There are salad dressings that are safe... obviously not the creamy ones (although the creamy texture can be from mayo and not milk/cream so you can check) or the italian ones (often have parmesan) but some good old olive oil and vinegar and spices (even a tex-mex spice mix) work great if you cannot find a store brand.

To substitute sour cream (from the dietician): 50ml of corn starch, 175ml of water and 50ml of vinegar. You can add spices to it to make it "Tex-Mex" or Greek or Italian...

Butter substitute... not easy but there are Kosher margarines out there.
I'll do a search for you. I use a store brand which won't help you (unless I Fedex it!) since you don't have our chains in the USA.


A post from me:
I found a whole table of Jewish Passover food and they had macaroons that I could have!!! I bought Almond, Chocolate, and Chocolate chip- NO DAIRY OR SOY! Ahhh chocolate! The brand was Manischewitz.

Bought Vanilla Rice Milk and Chocolate Almond Milk

Food for Life Rice Almond Bread

Dufty's Crumpets

And besides those I have Stacy's Cinnamon Pita chips that I love love love. I am eating Kanagroo whole wheat pitas for lunch and cream of wheat for breakfast every morning.

Chocolate Macaroons don't have nuts. They contain: Coconut, egg whites, sugar, invert sugar, potato glucose, cocoa, salt, artificial flavor, and potassium sorbate.

Pretzel Rods (check the label)
Dairy Free Gelato
Vans Waffels
Mrs. Leepers Rice Pasta


Reflux Websites:

www.infantrefluxdisease.com

great for reflux, silent reflux, colic. Although the HER forums are the best ever ; the Moms on the reflux forums are very supportive and helpful too. Under "Free tools" are checklists of symptoms to fill in and bring to the doctor when he/she is not taking this seriously.


http://www.aafp.org/afp/20011201/1853.html

Excellent printable article covering GER and GERD in infants and children. From the Association of American Family Physicians.



**** I just wanted to start this post. LOTS more info needs to be added to it- I just dont have the time right now. Please reply to this post and I will add the info. And one of the mods, can you please sticky this?

Thanks! :)

Robin
Last edited by nomore on Apr 08, 2007 7:29 am, edited 9 times in total.
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Postby krdoty » Apr 05, 2007 3:02 pm

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Postby Gracie » Apr 05, 2007 7:15 pm

www.infantrefluxdisease.com

great for reflux, silent reflux, colic. Although the HER forums are the best ever :lol: ; the Moms on the reflux forums are very supportive and helpful too. Under "Free tools" are checklists of symptoms to fill in and bring to the doctor when he/she is not taking this seriously.


www.actagainstallergy.com

general allergy info but more geared to MSPI and multiple protein intolerances. Has some great links... and you can sign up for updates. The Clinical diary is free and great for recording how each day/feeding is going so that you can keep a record for the doctor.

http://www.childrenshospital.org/clinic ... 024P0.html

Boston Children's Hospital Center for Aero-Digestive Disorders... info for families on the disorders and also available to book consults if you want.

http://www.aafp.org/afp/20011201/1853.html

Excellent printable article covering GER and GERD in infants and children. From the Association of American Family Physicians.

https://www.sickkids.on.ca/sfs_site/sho ... ervice.asp

Specialty Food Shop of the Toronto Sick Kids Hospital (home of Motherisk as well...). You can consult a Registered Dietician by e-mail or phone for suggestions and help... they can recommend "safe" foods to you depending on the allergy and needs.

http://www.kidswithfoodallergies.org/index.php

The name of the site is pretty explanatory! They have recipes... and under "marketplace" links to sellers of allergen-free foods.

http://www.foodallergykitchen.com/substitutions.asp

Not the greatest site, there is a cookbook for purchase; but I love the fact that they offer "substitutes" suggestions for pretty much all the major allergens.

http://www.allergyblock.com.au/recipes/default.asp

From our friends down under, one of the best organized and labelled recipe sites for multiple-allergen free recipes.


I've got more; I'm just short on time right now...

:hugs:
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Postby JustMelissa » Apr 06, 2007 10:40 am

Hi, I'm Melissa and I am breastfeeding my 2 month old son Aidan who seems to have a Milk-Soy-Protein-Intolerance (MSPI). This means that I have had to modify my diet so that I don't ingest milk or soy. Some children also react to beef, Aidan doesn't seem to be having a reaction (yet!).

Right now I have some safe foods:
Cream of Wheat
Stacy's Pita Chips (Cinnamon Flavor)
Whole Wheat Pita Bread
Rice Dream Rice Milk (Vanilla and Chocolate Flavors)
Almond Milk (Chocolate Flavor)
Dole Frozen Fruit Bars


I love veggies and most fruit. I was struggling with a butter/margarine that was safe and I think I finally found one:
Fleischmann's Light Margarine
It's made with corn oil and the label says "pareve" for those that are Jewish so they know that it is dairy free (thanks Gracie!) It also does not have soybean oil in it.

Reading labels has become standard so that I can protect Aidan from the foods that cause his vomiting, spitting up, and a horrible diaper rash.

I am going to cut and paste some of the helpful information from the Life Forum where I started a thread on MSPI.

From Kendra:
Kroger items:
*Del Monte light peaches
Tastee Apple Chips (haven't tried them yet)
Corn Bitz (think Corn Chex)
Honey Go Rounds (think Honeycombs)
Stacy's Pita Chips, Simply Naked and Cinnamon varieties
Tostitos Natural corn tortilla chips
*Carr's Table Water Crackers (haven't tried them yet)
*Barilla mushroom & garlic pasta sauce
*Barilla tomato & basil pasta sauce
*Bertolli marinara with burgundy wine
*Grape Nuts
*Hunt's tomato sauce with basil, garlic & oregano
*RoTel milder diced tomatoes & green chilies
*Kitchen Basics natural chicken stock
La Tortilla Factory soft taco size tortillas - 100% fat free (other varieties are not milk/soy free)
Duffy's crumpets (found in refrigerated section)
*Kangaroo pita pocket bread - 100% whole wheat

Whole Foods items:
(some may be available elsewhere)
*365 Organic cinnamon graham crackers
365 BBQ potato chips
Nueva Cocina tortilla soup
Shelton's chicken tortilla soup
*Whole Pantry Sea Salt & Roseary Crostini (haven't yet tried)
variety of dried fruits from "Just Tomatoes"
*Shelton's turkey chili
365 All Natural Root Beer


From Gracie:
Grains: Infant cereals from Beechnut and Healthy Times; Rice Crispies, Cheerios, Shreddies, Shredded Wheat. Hot cereals prepared without milk: oatmeal, cream of wheat; Regular and whole-wheat pasta, white or brown rice; egg noodles; pita bread, english muffins, flour tortillas (wraps). There are brands of muffin mix that are soy and milk free (add oil that is not soy based and substitute juice or almond milk for the milk). Some crackers, bisuits, cookies are milk & soy free but the recipes change, so always check the ingredients. (Premium plus 5-grain were okay at last check...)

Milk products: Alimentum or Nutramigen, Lamb-base, Coconut milk, Almond milk, rice milk. Any desserts made from these.

Meats and alternatives: Lamb, pork, horse, wild game (moose, deer,...) poultry (non-basted)... turkey, chicken, quail, duck, goose. Sausages from any of these meats (verify ingredients); Fish and seafood (caution with flavored tuna and salmon in cans and with battered items); Ham, bacon, eggs

Veggies and Fruits: All fresh, canned, frozen. Dried fruits and juices. Potatoes without milk or butter. Many commercial soups (be careful of ingredient list that it is not a beef-based broth)

Fats and Miscellaneous: Margarines not containing milk or soy. Mayonnaise (check label). Many whipped topping substitutes, sugar, maple syrup, table or corn syrup, honey, molasses, fruit jellies/jams, marmalade

When reading labels avoid: beef, beef fat, butter, casein, cream, gelatin, lactalbumin, lactoserum, lecithin, milk, milk solids, veal, whey, tarrow, oleo, soy, soya, soy bean, soy bean curd, soy flour, soy granules, soy grits, soy isolate, soy lecithin, soy milk, soy oil, soy sauce, tempeh, tofu, miso, HPP (hydrogenated plant protein, TVP (textured vegetable protein), HVP (hydrogenated vegetable protein), Hydrogenated vegetable oil (if the source is unidentified)

TIPS: The word PAREVE or PARVE on the label means the item does not contain milk

Soy sauce substitute: 2 tsp molasses, 1 tsp hot water, 1/4 tsp salt

Dark chocolate is usually safe...

Also, in case you didn't know, Indian food (east indian) excludes cows (they are sacred and foods should not contain cow's milk either... but always double check and they may contain soy)

BTW... Rice Dream also makes very tasty (subjective I guess...) ice cream bars... or you can get plain vanilla and put fresh fruit or warmed jams over it.

There are salad dressings that are safe... obviously not the creamy ones (although the creamy texture can be from mayo and not milk/cream so you can check) or the italian ones (often have parmesan) but some good old olive oil and vinegar and spices (even a tex-mex spice mix) work great if you cannot find a store brand.

To substitute sour cream (from the dietician): 50ml of corn starch, 175ml of water and 50ml of vinegar. You can add spices to it to make it "Tex-Mex" or Greek or Italian...

Butter substitute... not easy but there are Kosher margarines out there.
I'll do a search for you. I use a store brand which won't help you (unless I Fedex it!) since you don't have our chains in the USA.


A post from me:
I found a whole table of Jewish Passover food and they had macaroons that I could have!!! I bought Almond, Chocolate, and Chocolate chip- NO DAIRY OR SOY! Ahhh chocolate! The brand was Manischewitz.

Bought Vanilla Rice Milk and Chocolate Almond Milk

Food for Life Rice Almond Bread

Dufty's Crumpets

And besides those I have Stacy's Cinnamon Pita chips that I love love love. I am eating Kanagroo whole wheat pitas for lunch and cream of wheat for breakfast every morning.

Chocolate Macaroons don't have nuts. They contain: Coconut, egg whites, sugar, invert sugar, potato glucose, cocoa, salt, artificial flavor, and potassium sorbate.
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Postby JustMelissa » Apr 06, 2007 10:42 am

I wanted to include more "safe" foods:
Pretzel Rods (check the label)
Dairy Free Gelato
Vans Waffels
Mrs. Leepers Rice Pasta
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Postby JustMelissa » Apr 10, 2007 7:51 am

The following foods are the least likely to provoke allergic reactions according to http://infantrefluxdisease.com/food-intolerance.php

Beverages:
Almond milk, Quinoa milk, herb teas, apple juice and other pure or freshly squeezed fruit juices without sugar or additives (dilute 50:50 with water).
Roasted grain beverages may be used as coffee substitutes. If you like fresh coffee, Dandelion root which you can grind in a coffee grinder.
Soya milk is fine UNLESS you have an allergy to soya!

Cereals:
Oats (unless you have diagnosed Coeliac disease or are known to be “sensitiveâ€Â
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Postby angie » Apr 10, 2007 5:03 pm

Just a trick for mom's or older kids on the MPI -

I've been off dairy for a while now. I had to stop because I am MPI. Once I stopped, my asthma improved so much, that I hadn't used my inhaler in over 2 years before we conceived.

My doctor told me that most people *don't* outgrow it, we just either ignore the symptoms, or attribute them to something else. Because it is deeply engrained in us that milk must be good for us. He'll give a whole speech on it that lasts about an hour. :)

Anyway, he offered two tips that are helpful that weren't covered above. But did say that I needed to be off the milk products for at least 6 months first. The first was that I could have organic heavy cream. It has no milk protein in it at all. To dilute it down to 1:4 parts with water, and it makes a good milk substitute. The other is that I *could* have milk - IF and he really really stressed the *if*, it were fresh from the cow. He then had another nice lecture on how the processing of milk affects the protein in it and that is part of why it is so allergenic.

Now, I don't have a cow in the back yard, but I do use the heavy cream with great success. I've used it as milk, and I've made ice cream from it as well. Works great!
Angie

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Postby JustMelissa » Apr 10, 2007 9:10 pm

Hmmph, very interesting. I am trying out a new doctor tomorrow and hoping she'll give me more information.

Glad to have you here in the post partum forums!
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Postby angie » Jul 21, 2007 9:46 pm

I've seen and heard lots of concern about "depriving" oneself of nutrition if you don't get dairy products. Which, isn't really correct, but I digress. I'm here to tell you about my latest find...

Hempmilk!

Me and my kids love it. The original is just slightly sweet. So no need to get vanilla or chocolate. And nutrition wise, it beats the pants off of cow's milk! It naturally has protein and the good omega fatty acids that everyone is pushing now for baby's brain development! And it's enriched so the vitamin and mineral profile knocks the pants off cow's milk. It is a bit more expensive, so everyone out there needs to go buy some, so the supply will increase and costs will go down! :lol:
Angie

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Postby nomore » Jul 22, 2007 10:01 am

Angie

Thanks for the addition. I havent seen anywhere on this thread where anyone has mentioned they have been deprived of nutrition for avoiding dairy, so perhaps you were referencing something else???

In any event, after going through severe HG, if you are on an elmination diet (espeically like the one I was on- no wheat, dairy, soy (including vegeable oil), egg, corn, shellfish or nuts), after 5 months, it WASNT good for my health to continue on such a limited diet, when I already had such poor nutrition during my pregnancy. That was the advice of my personal medical DR (and honeslty, he was right). It wasnt balanced enough or rich enough to help my body recouperate from poor nutrition for the 9 months prior.

Thankfully, most Moms who eliminate usually just have to avoid dairy and sometimes soy, which is and can be still nutritionally balanced enough.
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Postby angie » Jul 22, 2007 1:45 pm

no, not on this thread! Just lots of concern when someone mentions eliminating dairy. There is so much misinformation out there that your diet isn't balanced, or is nutritionally deficient, if they eliminate dairy. Which honestly isn't true. A person *can* have a perfectly balanced, nutritionally sound, diet that doesn't include any kind of dairy products.

Now, a strict elimination diet such as you describe, does produce deficits. And without nuts or nut products, it would be extrememly difficult to overcome. You'd have to complensate with lots of lentils for what you were missing. And be very good about variety in veggies and fruits. Not a fun diet to plan out!
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ZEGERID COUPON

Postby krdoty » Jul 23, 2007 5:50 pm

http://www.zegerid.com/ZEGERID_Coupon.asp

The coupon at the site above will give $30 off your out of pocket cost. There is no indication on the coupon or the website that you cannot use the coupon every month.
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Postby krdoty » May 04, 2008 9:06 pm

bump
Kendra, M.W.F.E.
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Postby Lil7Deb » May 05, 2008 10:13 am

If you are having trouble finding allergen free foods try this grocer http://www.allergygrocer.com/index.html you can search by removing your allergy and it will show all products that are free of your allergy.
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Postby justme » Jan 14, 2009 7:47 am

Information Regarding MSPI
http://www.thepicfoundation.org/

Article:
Jul.06, 2003 : OMAHA WORLD HERALD ARTICLE ON MSPI

Published Sunday July 6, 2003
When babies' cries are more than colic
BY NICHOLE AKSAMIT

WORLD-HERALD STAFF WRITER Babies and milk. They go together like . . . well, babies and milk.

Rachel Ross was on a feeding tube at 6 months, top, and had a backpack-sized formula pump at 9 months, top right. At 15 months, she drinks from a bottle in mom Julee's lap. The Rosses are suing their insurance company over coverage for Rachel's formula.

So why can't some infants stomach cow's milk, soy milk or even mother's milk - the very stuff they need to grow?

Costly cans
--------------------------------------------------------------------------------
If breast-feeding isn't an option, babies with milk and soy protein intolerance typically are given hydrolized protein formulas such as Nutramigen, Alimentum and Pregestimil ($22 to $29 per can).

If those don't work, three amino-acid formulas, taken with a doctor's direction and ordered through a pharmacy, provide a last resort.

Neocate $28 to $40 per can
EleCare $35 to $42 per can
Vivonex T.E.N. $330 for 60 packets or $70 to $78 for 10 packets. Also need to add microlipids (fats), which cost $16 to $20 for enough for 10 packets.

Babies typically go through three cans of Neocate or EleCare a week and up to two packets of Vivonex per day. So a year's supply can run $4,368 for the cheapest formula to $7,154 for the most expensive.

That's what makes milk and soy protein intolerance (MSPI) so bewildering.

It's a growing problem. According to Omaha pediatric gastroenterology specialists, the condition may affect one of every 10 babies in the Midwest and more than 2,500 of the 25,000 babies born in Nebraska each year.

The condition, often mistaken for colic, can hurt babies' development and send families into emotional and financial turmoil. A month's supply of special formula can cost between $300 and $600.

As a result, parents are emptying their savings accounts, racking up credit-card bills and taking out second mortgages to buy expensive hypoallergenic formulas. Others are buying other families' leftovers on eBay to save money.

Jonathan and Julee Ross, the Omaha parents of two children with MSPI, have filed a lawsuit against their insurance company, which refused to cover the formula. They've also formed a support group.

Many at a recent support group gathering said denial and a lack of awareness prevent diagnosis and treatment.

Grandma might think you're overreacting to your baby's crying. Old-school docs or even new pediatricians, trained in places where the condition isn't as recognized, might miss the diagnosis or catch on only after several agonizing weeks land your baby in the hospital.

New parents might not know what's normal and may be reluctant to take their babies to a specialist.

"Babies cry, babies wake up at night, babies are fussy," said Jeff Wibel, whose son, Eli, now 3, suffered from the condition. "Eli was extremely fussy. We thought maybe we were bad parents."

Resources
--------------------------------------------------------------------------------
Eastern Nebraska MSPI Support Network. Meets once a month at Jaynes Street Community Church of God, 7534 Jaynes St. Next meeting is 7 p.m. July 20. Includes moms, dads and kids who have been there or are going through the problem now. Call the Rosses at (402) 573-8074 or e-mail them at jonjulee@peoplepc.com for information.

"The Milk Soy Protein Intolerance Guidebook/ Cookbook." Written by Tamara Field, a Papillion nurse and mother of an MSPI baby, it offers advice and recipes free of milk and soy protein for moms who want to keep breast-feeding. It's available for $14.95 through www.mspiguide.org

Web sites: www.foodallergy.org; www.apfed.org (American Partnership for Eosinophilic Disorders); and www.naspghan.org (North American Society of Pediatric Gastroenterology, Hepatology and Nutrition).

The allergy is far more severe than colic, which usually doesn't extend past 3 months of age. Colicky babies cry intermittently, usually for a couple of hours at the same time each day.

Babies with MSPI often wail constantly, 18 hours or more a day. Normal methods of soothing them to sleep - rocking, swaying, pushing them in a stroller, even driving them in a car - don't work.

They retch repeatedly and projectile vomit. They may have chronic congestion and diarrhea, blood or mucus in their diapers. They may refuse feedings because their stomachs hurt or, conversely, want to eat all the time because they feel temporarily better just after feeding.

Though most babies outgrow it by the age of 1, the condition poses serious health risks. Babies with severe cases can lose weight, develop more slowly, suffer internal bleeding and extensive inflammation in their intestinal tract, or have to wear a feeding tube and pump for several months of their first year of life. They even may be hospitalized for intravenous feeding, which could cause other complications.

The constant cries also can cause parents fatigue and emotional stress.

"I was at one point saying, 'I can't go on,'" recalled Michelle Myers, who has two sons who suffered from MSPI.

Some doctors and parents speculate the condition may lead to shaken-baby syndrome, as frazzled parents without support lose control.

"There were times when I said, 'I've got to put this kid down before I strangle her,'" said Jonathan Ross.

MSPI is not a recent phenomenon. But until the past two decades, diagnosis of babies' tummy troubles as anything more than colic was rare, and treatments were either nonexistent or experimental. Some babies even died.

"Babies were suffering, and nothing could be done," said Nancy Murray, research coordinator for the Center for Human Nutrition in Omaha.

That's one reason a handful of Omaha doctors and researchers began conducting clinical trials more than 20 years ago on some of the first formulas for babies' severe tummy troubles.

Ways to get it for less
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More than 95 percent of babies outgrow MSPI and begin their transition to regular milk and solid foods by age 1, so parents who buy more formula than they need often sell sealed, unexpired leftovers over eBay or other Web sites, sometimes for less than half the retail cost.

Kind pharmacists: Members of an Omaha support group say some local pharmacies sell specialty formulas at or near their wholesale cost.

Pediatricians: Some local pediatricians and specialists supply free samples.

Clinical trials: Omaha researchers are conducting several clinical trials of various formulas. Participants get free formula, though participation is limited. Researchers generally put the word out through pediatricians.

WIC and Medicaid: People who meet low-income requirements may receive medically necessary formulas free through the WIC program or Medicaid. Others may receive Medicaid waivers, depending on their child's severity and specific situation. But they have to first apply for and be denied Social Security and Medicaid coverage.

Insurance: Some insurance and health plans cover the formula as a medically necessary treatment, but rules vary. Some cut off coverage after a certain number of months, a specific age, or other medical treatments. Others don't cover it.

In the late 1970s, Murray joined University of Nebraska Medical Center Drs. Jon Vanderhoof and Dean Antonson in helping to develop three of the six formulas now used to treat babies with the condition.

Studies suggest that between 2 percent and 7 percent of babies have allergic reactions to cow's milk and that a good share can't tolerate soy milk, either.

Vanderhoof and Antonson estimate that MSPI occurs at a higher rate - closer to 10 percent - in the Midlands. But no one knows for sure why.

Murray said one reason may be that pediatricians trained in Omaha, where early research was done, diagnose it more readily. Antonson said the symptoms appear to be getting more severe, causing more people to seek help.

"When you have an infant who screams 20 out of 24 hours," he said, ". . . it tends to get the parents' attention."

Others think it's because the disorder is genetic. It appears to run in families and may be more common among the Europeans and Scandinavians who settled the Midwest.

Another theory is that allergic reactions increase with hygiene. Because our environments are so clean, said Vanderhoof, our immune systems don't have as much bacteria to react to, and they may treat food proteins as foreign.

In families with an MSPI history, eliminating milk and soy protein from a mother's diet for the last month or two of pregnancy and while breast-feeding can help. It's no easy task, but mothers who've done it say it's worth it.

"It's the only diet I've ever been on that I don't want to cheat on, because the consequences are so bad," said Kelly Klostermeyer, who has restricted her diet to keep her 3-month-old daughter, Rhyan, from having MSPI problems.

It's not for everyone. Some mothers start on the formula and lose the ability to produce breast milk. And, as the Rosses learned, some babies' intestines are so inflamed when the condition is diagnosed that they must be fed through an IV or a with a tube run through the nose to the stomach.

Even with the diet, some babies react to other proteins found in breast milk.

"That baby's immune system is half mom's and half dad's," said Antonson. "And the infant may recognize mom's milk protein as being foreign."

If breast milk isn't an option, doctors typically recommend formulas where the protein has been broken down, such as Nutramigen, Alimentum and Pregestimil.

With time, those formulas work for most babies, Vanderhoof said.

Some, however, need the more expensive amino-acid formulas. Vanderhoof and Antonson said these formulas are difficult to manufacture and thus costly.

"We took out a home equity loan on our house to pay for our daughter's formula," said Omaha mom Heather Nebesniak.

The Rosses spent their savings on formula and now charge it on credit cards. They filed a lawsuit last month against their insurance company, which denied coverage of the formula that doctors said Rachel needed to survive. The company deemed it a "nutritional supplement."

For a few unlucky families, none of the formulas work. Nebesniak tried both types with her 6-month-old daughter, Marlee, who no longer has a feeding tube but still struggles to keep any formula down.

"I think there's some breakthroughs yet to come," said Vanderhoof, who is on leave from UNMC to oversee clinical studies for formula manufacturer Mead Johnson Nutritionals in Indiana. "We'll find out what causes the baby to become allergic and treat that rather than eliminate the allergen."

The Food Intolerant/Allergic Baby
http://home.vicnet.net.au/~disa/Food%20 ... 0baby.html

Dairy and Food Allergies in the Breastfed Baby
http://www.kellymom.com/babyconcerns/fo ... ivity.html

Milk Allergy Diet
http://www.lpch.org/DiseaseHealthInfo/H ... /milk.html

Soy Allergy Diet
http://www.lpch.org/DiseaseHealthInfo/H ... y/soy.html

This is a great article discussing primary and secondary reflux in infants. Primary reflux is when an infant has reflux. However, lots of infants have secondary reflux - basically, they are milk protein intolerant and it CAUSES the reflux. Thus, you must treat the MSPI as well as the reflux to help truly alleviate your baby's issues.
http://pediatrics.aappublications.org/c ... type=HWCIT

Karen
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Postby justme » Jan 14, 2009 8:49 am

Please be aware that Reflux can cause Apnea episodes and Sandifer's Syndrome in infants.

Sandifer's Syndrome looks like a seizure - but it is not one. Basically, the baby's body is so overloaded with pain that it responds neurologically with an episode that may be mistaken for a seizure. For some reason, this is more common with infants that have silent reflux (instead of spitting up, they swallow and it can go undiagnosed for longer).

Information about Sandifer's Syndrome
http://www.marci-kids.com/rigidbodyposturing.html

Information about PPIs for reflux
http://www.marci-kids.com/
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Postby justme » Jan 14, 2009 9:49 am

Interesting information about food allergies/intolerances/testing/and behavioral issues (not from a medical professional, but from a mom's experience):

http://www.infantreflux.org/forum/forum ... ?TID=10815

Skin testing (and RAST testing) shows the body's IgE immune response, which is an immediate reaction within the body. The most common symptoms of IgE allergies include rash, hives, swelling of mouth/face/throat, anaphylaxis, etc. Skin testing is supposed to be very accurate in testing for IgE mediated allergic responses. RAST isn't quite as accurate, from what I've heard.

However, there is a lot of emerging evidence and new research showing that the body can also have IgG immune reactions to foods. This is still controversial, and not widely accepted by allergists. IgG immune reactions (some call these allergies, some call them intolerances) are delayed, and are therefore hard to determine. They can take hours to days to show up. This means your child could be having runny nose, irritability, sleep problems, etc. today, but that could be due to a food that they ate today, yesterday, or the day before. Very common IgG reactions to milk (usually to the proteins casein or whey) include runny nose, chronic ear infections, dark circles under the eyes (a.k.a. allergic shiners), eczema, changes in bowel movements (usually to either extreme: loose stools - about 75% of kids, or constipation - about 25% of kids), and sleep problems (difficulty falling asleep, or night waking). Kids can also be overall irritable, cranky, oppositional, etc.

For anyone suspecting milk problems and traditional skin prick testing (or RAST testing) doesn't show anything, it is best to do a 6 week completely milk free trial, then do a milk challenge to see if symptoms show up. If you do this, you would have to be 100% milk free - no hidden dairy in breads, crackers, baked goods, margarine, sauces, soups, salad dressing, chocolate, etc. and obviously no milk, cheese, ice cream, etc. There are lots of great milk substitutes you could use during this period, but I would avoid all animal milk, including goat's milk since it contains casein as well. After 6 weeks of going dairy free, you would then reintroduce some milk products and watch for a reaction. Remember, the reaction could take a few days to show up. This is traditionally the best indicator of intolerances.

However, there are labs that perform IgG allergy testing (sometimes called ELISA testing), but this would likely be an out of pocket expense, since this type of allergy is not yet widely recognized and accepted by the majority of the medical community. There are only a few labs in north america that do this type of testing, so you would likely have to have a local doctor order the test, have a local lab draw the blood (it's only 1 vial) then have the serum shipped to the lab doing the testing. The one drawback to IgG testing, is that the IgG antibodies will only be present if the person is currently eating the food in their diet. So if someone is 100% milk free, for example, the IgG response to milk would likely be negligible or nonexistant. I would really only recommend IgG testing if the child has serious behavioural and sleep issues (for example kids with diagnosed or suspected autistic spectrum disorders, ADHD, severe sensory integration disorders, etc.). If this isn't the case, then a food challenge is usually the easiest and best determinant of food intolerances likely due to the IgG immune response.

We had *** IgG testing done through the Great Plains Laboratory in Lenexa, KS. He showed no reaction for milk, soy, wheat, egg, etc. via skin testing (IgE) but significant reaction those and other foods on IgG testing. Since removing these foods, and others that showed a moderate to high reaction on the IgG testing, we have seen a world of difference in him - especially in his behaviour and sensory integration issues! I can't even begin to describe it! He is a much happier boy - not constantly irritable, no more daily tantrums, etc. Even my MIL mentioned what a difference she saw in him (and we all know what a huge thing it is to hear a positive comment like that from a MIL!).
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