Milk Soy Protein Intolerance A Mother's Perspective

Author: Tamara Field

I first learned of Milk Soy Protein Intolerance (MSPI) in the

office of a pediatric gastroenterologist's office with my

seven-week-old son, Max. After the first week of his life Max

lost weight and was labeled "failure to thrive." As an educated

mother and nurse I was devastated that this could happen. That

day in the GI specialist's office, he performed a

proctosigmoidoscopy and biopsy on Max. He sat me where I could

see him perform the test and told me what I would see. He said

that the lining of the bowel would be red, swollen and bleeding,

and it was. I just sat there and cried. After the test was over

and I could hold Max, Dr. Mack told me that MSPI was indeed what

Max had and that I should stop breastfeeding right away and put

him on a special formula. He told me that there was a diet I

could follow if I wanted to continue breastfeeding, but that it

was very stringent and difficult. Wanting to make the best

choice for my son, I stopped breastfeeding that day and started

him on Alimentum. The results were dramatic. After one bottle of

Alimentum he slept for 2 and 1/2 hours straight; the longest he

had ever slept.

After learning all about MSPI with my first son, I was more

determined that ever that I would 'master' the MSPI diet and

breastfeed my second child. So, I set out to the grocery store

with a list of forbidden ingredients in my hand. Gradually,

after many hours spent standing in the aisles of the grocery

store reading labels, I began to find dairy-free, soy-free

substitutes for the foods I might normally eat. All the

information I collected and recipes I tried, with my husband's

encouragement, were compiled into a book: The Milk Soy Protein

Intolerance (MSPI) Guidebook /Cookbook which was published in

the fall of 2001. We also have an informational website for

MSPI: http://www.MSPIGuide.org.

Milk Soy Protein Intolerance is diagnosed by pediatricians,

family physicians and specialists in pediatric gastroenterology.

It seems to be more highly prevalent in the midwest, but

throughout the country it is given different names, such as:

protein intolerance, food protein-induced colitis or

eosinophilic gastroenteritis. MSPI is diagnosed through the

history of an irritable infant, or colic-like behavior, poor

growth and abnormal (blood streaked) stools. Some infants will

exhibit frank blood in their stools. Confirmation of the

diagnosis is often made with a biopsy of the intestinal lining

which would show an increased amount of eosinophilic cells,

eroded intestinal villi and the presence of hemorrhagic tissue.

It is thought that the intestinal lining cannot properly digest

the proteins (milk and soy) therefore they are taken up into the

blood stream where the body treats them like an antigen and

produces antibodies mimicking an allergic response. The

intestinal tract then recognizes the ingested proteins as it

would an allergen and the intestinal lining reacts by becoming

inflamed, often shedding blood into the stool. Some blood may be

visible in stools and other blood detected by occult blood

testing. The lining of the intestine, then, becomes further

damaged as it is continuously exposed to these proteins.

No one really knows why the occurrence of MSPI is prevalent in

the United States and especially more prevalent in the midwest

region, but one of the theories has to do with our more 'sterile

environment.' We, in the United States are so preoccupied with

keeping our environment clean and free of germs. In other

countries, especially those of the third world, infants and

children are exposed to so many other more serious bacteria,

toxins and allergens that their tolerance may become greater due

to increased exposure. It also seems that the occurrence of MSPI

is congenital; if one child has it, the chances are very high

that the subsequent children will have MSPI and that it may be

more severe.

Infants diagnosed with MSPI can still be breastfed if the mother

adheres to a milk and soy protein-free diet. Many mothers, as I

did the first time, choose to stop breastfeeding and place the

infant on a specialized formula right away to help them heal

faster. Then, if there are subsequent children the mother can

start a milk and soy protein-free diet the third trimester of

her pregnancy and continue it for as long as she wishes to

breastfeed. Though there are many benefits of breastfeeding,

with MSPI the avoidance of high formula cost can be the greatest

benefit. The formulas you can buy at most supermarkets or

pharmacies are: Alimentum, Progestamil and Nutramigen. These

formulas cost $7 to $8 per can which is a 1-2 day supply. Other

more specialized formulas, such as Neocate, can be obtained from

the pharmacy, or from the doctor prescribing the formula, or at

a hospital. These formulas cost anywhere from $31 - $40 per day

and up. Of primary issue is cost;can the parents can afford to

feed their infant?

I met Chuck Stepanek in Lincoln at a legislative hearing which

brought forth the issue of insurance coverage of specialized

formulas in the treatment of MSPI. After I testified, he tapped

me on the shoulder and handed me his card asking me if I would

be willing to write an article for NNA. In the legislative

hearing for LB 1047, other families testified that they were

finacially devastated by the high cost of formula for their

infants. Insurance would pay for the formula only if the infant

was hospitalized and

fed through a nasogastric tube. Unfortunately, many of these

families had to experience this before their infants started

thriving. The bill is still alive, but we will probably need to

reintroduce it several more times, and get even more support for

our cause.

Our sons are now fine; they are happy, healthy little boys.

Within one year they outgrew the intolerance and could be

started on whole milk. Normally that is the case, but there are

a small percentage of infants that continue the intolerance into

childhood. I am grateful to the care of our pediatrician who

refused to call my sons screaming 'colic' and preferred to look

for a cause to his pain. I feel so deeply for other parents that

go through this. We were very fortunate, in retrospect,

fortunate that we could afford the formula that our infant

needed, that we could get him the best medical care, that he

case was not more severe, that we found our what was wrong early

in his life. Others are not that fortunate; it is for those that

we will keep working to get information on MSPI to the public

and insurance benefits to cover the cost of formula for these

infants.

About the author:

Tamara Field is a Registered Nurse and works as the Coordinator

for Critical Care and Short Stay at Alegent Midlands Hospital in

Papillion, NE. She is also a singer, performing and teaching in

the metro area. She holds a Doctorate in Vocal Performance and

Pedagogy from the University of Colorado at Boulder. Nursing has

afforded the opportunity to have a flexible work schedule and

have great variety in her career choices.

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Milk Soy Protein Intolerance A Mother's Perspective

Article : Milk Soy Protein Intolerance A Mother's Perspective