Milk Soy Protein Intolerance: A Mother's Perspective

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.