Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Friday, July 16, 2010

The Dietician

One week after our allergist appointment we had a visit with a pediatric dietician back in St. Cloud. She went over the dairy allergy with us, noted that Kara was on Nutramigen and asked us how she was tolerating that. We told her that it wasn't going very well. She seemed to be really urpy and having nasty diapers again and this didn't surprise her one bit. We were told to take Kara COMPLETELY off of all dairy for one month to see how she does, if her skin clears up and her digestive track gets back to normal (whatever normal is for her) we'll slowly add it back in small amounts to see what she can and can't tolerate. She also said stick to the Neocate and sent us home with samples of it along with Elecare, a similar brand.

Dairy comes in lots of names on food labels. We were given cards to keep in our wallets of foods that contain these ingredients: milk, butter, casein, whey, yogurt, cheese to name a few. Both sides of this card are full. Also on it are foods that may contain the presence of milk like caramel, chocolate, flavorings, lunch meat, and hot dogs. Whew. I didn't know how we were going to manage feeding Kara!

We stopped at the grocery store on our way home while everything was fresh in our minds. We had lots to watch out for now - rice, oat, all that dairy and soy to be on alert for. Good thing Kara loves her fruits and vegetables, and can have wheat!

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