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Milk Soy
Protein Intolerance: A Mother's Perspective
by
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
financially 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.
Bio:
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.
Author of The Milk Soy Protein Intolerance (MSPI) Guidebook / Cookbook
For More Information: http://www.mspiguide.org
tfvoice@aol.com
This article provided by the Family Content Archives at:
http://www.Family-Content.com
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