Maddy’s Story

I had a very img_20160922_2006278_rewindnormal pregnancy with my daughter. Everything was on track. When labor started, it was a long labor and I ended up having an emergency C-section. While I was in the recovery room, my husband was with our daughter while they tried to feed her 3 different formulas ranging from the normal one they give to infants, to a very sensitive formula that they would give to a preemie. She reacted to all 3 they tried, so they told me that I would need to breastfeed and hope for the best. Breastfeeding was my original plan all along so I was not worried.

The Pediatrician that we had through the hospital at the time didn’t seem too concerned by the episode. He mentioned that she may be lactose intolerant in the future, but she should outgrow it. When she was 6 months old, we switched to a new Pediatrician. She was very knowledgeable and genuinely cared about the kids she saw. When we talked about her episode at birth and how she still seemed to be having issues with digesting her milk, I was thinking possible colic. We then received a definite diagnosis of Lactose Intolerance and had a plan to start switching her to soy milk before she was 12 months old. This transition went very well.

In the next few years, she would struggle with very upset tummy and not gaining and maintaining weight. Around 3, we really started noticing that she would randomly vomit in her bed at night, roughly 4-6 hours after supper. We were unsure what was causing these reactions, which would range from just a few times of vomiting in a night to she would continue until her tummy was empty and then sleep for the next day. She missed quite a bit of preschool due to her reactions. The school was also not letting us substitute her milk for lunch or if lunch had milk in it, they would not allow us to bring her home lunch. We saw many days of troubles.

In Kindergarten, we linked troubles to Peanut Butter and then we asked to see an allergist. We visited with the allergist and she took blood samples and did the full allergy panel. Maddy was 5 when she was diagnosed with FPIES. We were the only family in our area with a child with FPIES. Explaining what it is was difficult. People didn’t understand. It was extremely overwhelming for our family as we also had a new baby in the house and had to completely revamp our food menu. We could not do family functions. We found out the hard way at Thanksgiving that year, when I failed to ask the hostess to save some potatoes for Maddy before adding butter, milk and cream. We also found out that turkey was a trigger for her too. She was a very sick little girl that year. For about a month, she continued to struggle with her triggers as she was super sensitive to foods at that point.

Maddy is currently 8 years old and {we feel} she will more than likely continue to have FPIES her whole life. We have completed food trials this summer, but milk/dairy, peanut butter, white potatoes, sweet potatoes, turkey and beef still continue to be triggers. She is able to eat most foods, but she tends to stay away from new foods and has anxiety about eating food that is not from home. She is able to deal with her FPIES, knows what her triggers are, and is finally gaining and maintaining a healthy body weight that her pediatrician is happy with.

 

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Page published: Sept.29, 2016. Copyright © 2012,The FPIES Foundation