Ingredients To Avoid:
MSPI Alerts & Announcements:
Sep.12, 2008 : Breastfeeding Support: Bosom Buddies
Breastfeeding help is here for those in the Omaha and surrounding areas. Bosom Buddies is a Lactation Consulting Service started by Diane Erdmann, RN, BSN, International Board Certified Lactation Consultant.
Diane not only offers individualized consultation, but group support, education and a wide variety of lactation products for sale.
Visit Diane's website at www.BosomBuddiesOmaha.com or call her at 402-707-1696.
Aug.09, 2003 : BOARD/DISCUSSION GROUP
I just started a discussion forum at QuickTopic for our topic
"milk soy protein intolerance". To join in (or just to read) use
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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?
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."
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 firstname.lastname@example.org 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
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."
Jun.17, 2003 : Culturelle, dietary Lactobacillus GG
Go to Culturelle.com for further information. This may be very beneficial for MSPI moms . . . if you start taking this supplement during the third trimester of your pregnancy when you start the elimination diet, it may help ease the symptoms of MSPI for your infant. Culturelle is a Lactobacillus preparation the restores normal healthy beacteria into the digestive tract. Several pediatricians, even GI specialists have been recommending the product. Discuss it with your doctor or pediatrician.
Nov.23, 2002 : Journal of Human Lactation Review
On page 406 of the November 2002 issue of the Journal of Human Lactation is a very favorable review of the Milk Soy Protein Intolerance Guidebook/Cookbook.
Jul.08, 2002 : New Products: Soyco
Some new products are now available which are manufactured by Soyco Foods, a division of Galaxy Foods Company. Though they bill many of their "dairy alternatives" as milk-free and soy-free; the only product that was completely milk and soy-free was their "low fat sour cream substitute." The "butter alternative" and "cream cheese alternative" both contained casein.
Although not a creamy texture it may be used as a substitute for yogurt or sour cream in casseroles or cakes. View their website: www.soyco.com
Jan.25, 2002 : "Better Than Milk" & "Trident" gum
"Better Than Milk" is going out of business. Some of their products may still be available depending upon your location(including their powdered rice milk). "Trident" tooth gum contains casien which is a milk derivative.
Oct.24, 2001 : OMAHA WORLD HERALD
Click here to view a recent article from the Omaha, Nebraska newspaper regarding the MSPI Guidebook/Cookbook.
Oct.23, 2001 : MARGARINE ALERT
Fleischmann's unsalted margarine(stick form)recently put out a recall on a batch with the following lot #: April 15/02 EN 15. This batch contains whey which is milk protein. Check the lot # on the boxes you purchase and if any of them match phone 1-800-257-5594.
Oct.23, 2001 : SEMI-SWEET CHOCOLATE
Sometime after the first of the year, Ghiradelli started to run this message after the list of ingredients,"may contain trace amounts of nuts, flour gluten or milk protein." In all fairness to Ghiradelli this disclaimer may have been placed on their packaging earlier than spring, 2001; but they did not reach our supermarket shelves until that time. The company says that since they make their semi-sweet chocolate on the same manufacturing line as they make other chocolates; they cannot be certain that minute traces of milk protein are not in their semi-sweet chocolate. Guittard chocolates has recently indicated the same thing. I did use these products while on the MSPI diet and my son suffered no side effects. Those who may be allergic to milk, as opposed to those who may be intolerant, should consult their physician.