Milk Soy Protein Intolerance: A Mother's Perspective by Tamara Field

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.

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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.

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