Meet The PIC Team: Beth

My super sweet baby boy was born in March 2011. At only 4 days he was admitted in the ICU for severe dehydration.  The dehydration was so severe that he had lost almost 2lbs in those 4 days and it was affecting his liver and kidney function.  I was told at the time that he was so dehydrated because my breast milk had not fully come in, and was told to start supplementing with formula.  Because this was my second child, I knew that something was not quite right with that answer.  My biggest concern was that he was having 10-15 dirty diapers a day, so if he wasn't eating enough, how could he be having that many BMs? My questions were disregarded and we were sent home after 4 days in the ICU.

At home Jaiden was both nursing and supplementing with formula. I knew in my heart that something else was wrong, that something else just wasn't right.  A week after being on the formula, Jaiden started having bloody diapers.  It was suspected he had a milk sensitivity and he was then switched to soy formula.  After about a week on that, he continued to have the bloody diapers and was switched to Nutramigen and I stopped nursing.  After another week on Nutramigen, and continued bloody diapers, I researched and found Nutramigen AA for severe Milk Protein Allergies.  I presented this to his doctor, she had never heard of it, but agreed that we should try it.  Only, at that point it was too late.  At 5 weeks old Jaiden's blood count had dropped too low.  He was again admitted to the ICU and then later transferred to U of M where he could be seen by a Pediatric GI.  There he received a blood transfusion and an upper and lower GI scope.  He was diagnosed as MSPI and started on the Nutramigen AA, and was on that formula until his first birthday.  It took a few weeks, but the bleeding stopped and his blood count went back to normal.

At 6 months old we started solid food with Jaiden. We started with all white and orange foods, because those are the foods with the smallest proteins.  We tried one food at a time for 10 days before introducing another food.  During that first year we found he reacted to Dairy, Soy, Sweet Potatoes, Beef, Wheat, and Peas.  However, he did pass many other foods, and now has a list of 29 safe foods.

Now at age 1, Jaiden has been diagnosed as MFPI. He remains on a very restricted diet and each new food is slowly introduced over the course of many days.  I make almost all of his food from scratch, which is very time consuming.  With the help from a dietitian, we have decided to wait until Jaiden is 3 before trying any of the foods he has reacted to.  Until then, he is on Neocate Splash Amino Acid based formula, along with calcium and vitamin D supplements. I have very little guidance from the medical field, so 99% of my decisions are based on information I have learned in support groups such as PIC foundation.