Infants diagnosed with MSPI can still be breastfed if mother adheres to a milk and soy protein-free diet. Many mothers, as I did first time, choose to stop breastfeeding and place infant on a specialized formula right away to help them heal faster. Then, if there are subsequent children mother can start a milk and soy protein-free diet 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 avoidance of high formula cost can be 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 pharmacy, or from doctor prescribing formula, or at a hospital. These formulas cost anywhere from $31 - $40 per day and up. Of primary issue is cost;can parents can afford to feed their infant?

I met Chuck Stepanek in Lincoln at a legislative hearing which brought forth issue of insurance coverage of specialized formulas in treatment of MSPI. After I testified, he tapped me on shoulder and handed me his card asking me if I would be willing to write an article for NNA. In legislative hearing for LB 1047, other families testified that they were finacially devastated by high cost of formula for their infants. Insurance would pay for formula only if 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 intolerance and could be started on whole milk. Normally that is case, but there are a small percentage of infants that continue intolerance into childhood. I am grateful to 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 formula that our infant needed, that we could get him 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 public and insurance benefits to cover cost of formula for these infants.

Before I knew it, he was perched so erect upon my finger! His wings slowly stretching outwards as if he was breathing through them and filling up with air. They began to billow, inflate and expand. Then sure enough, after he had entrained enough air and energy, he took off and wafted through air. He glided, soared into heavens, then drifted back down to me.

I help my left finger up to him again, as he rested ever so gently upon it. He stood there for a brief moment, then, with a flutter, lifted off towards puffy clouds and blue skies again, gently touching my ear as he passed by to whisper “thank you”.