Things They Never Told Me: Allergies and Intolerance

Grace was born on January 28, 2013 after a long difficult pregnancy. She was a healthy 9 lbs 14 ounces and aside from some blood sugar issues, had a complication free birth. She latched quickly and seemed to love nursing!

When Grace was a month old, she had an episode of vomiting then stopped breathing. She turned blue. It was the most terrifying thing I have ever experienced. We rushed her to the ER where many tests were run. They told us this happens often to babies, kept us overnight to observe her, then sent us home with a diagnosis of reflux and a prescription for Zantac. By this point, Grace was also screaming for the majority of the day and night. I had stopped leaving the house because she would just scream constantly. Play dates were impossible, even a simple trip to the grocery store could be a nightmare. I spent many nights with her in the Ergo bouncing on a large exercise ball willing her to just go to sleep while she alternates between screaming and nursing.

We began the Zantac. I also removed dairy from my diet, thinking that perhaps Grace had an allergy. She was growing well, and nursing constantly. Neither the Zantac nor just removing dairy seemed to help with her issues though. She also developed a red, raw, bleeding diaper rash at that point despite using cloth diapers and no wipes.

At six weeks she had an episode of vomiting and diarrhea so severe that she was hospitalized for two nights on an IV. She was terribly dehydrated and lethargic. At this point I was advised to remove soy from my diet also. She kept on growing despite all of her vomiting, and I credit her constant nursing for that.

Around 4 months we stopped Zantac because it didn’t make any difference and began Prilosec. She also started a probiotic.

At 5 months, I cut gluten from my already limited diet. This is when we noticed a bit of a change. She no longer screamed 90% of the day and began progressing more with her milestones. Her diarrhea and vomiting continued and her diaper rash persisted but she appeared to be improving as a whole.

At 6 months she weighed 19 lbs 8 ounces. We were given the go ahead to start solids and told that this would help her reflux issues. I desperately hoped this would be true.

Her first food experience was watermelon. We noticed that she would begin to spit up/vomit a few hours after each new food. We attributed that to her learning to accept solids and her stomach needing to mature.

At 7 months I gave her a bit of rice. 2 hours later she began vomiting to the point that she was lethargic and extremely sleepy. This lasted throughout the night, I took her in to the ER the next morning and was told she had a virus. She was given fluids and had blood work done because she was also bruising very easily. We also noticed that she had dropped over two lbs in a month. When we followed up with her pediatrician, they told us to stop all solids until nine months because some babies simply matured later.

She nursed like crazy and I kept with my gluten/soy/dairy free diet until 9 months. At her check up, her weight had been restored but she still was vomiting, and had an awful rash. We were referred to a gastrointestinal specialist who referred us to an allergist.

By this point, I had done a lot of research on my own and found that her symptoms were very consistent with a disorder called Food Protein-Induced Entercolitis Syndrome (FPIES).

Our appointment with the allergist confirmed my suspicions. Grace had both chronic and acute FPIES. This means that she would react to foods within hours or a reaction would build up over days or even weeks. The diaper rash, stool, blood in diapers, and vomiting were all symptoms of FPIES. I was advised to cut red meat, rice, and caffeine out of my diet.  These changes made a huge difference and she began to thrive on my limited diet.

We exclusively nursed, no solids, for about 14 months.  At that point we began to trial foods.  One at a time and beginning with those least likely to cause a reaction.  Thankfully, by the age of 2.5 she had outgrown many triggers.  We noticed some continued GI issues, and eventually she went on to be diagnosed as having Celiac Disease but all of the things she wasn’t able to tolerate as a baby are back in her diet.  She is almost 6 years old now and shows no ill effects from either being on such a limited diet for so long or being exclusively breastfed for so long.

No one ever told me that babies can have allergies and intolerance and react to things via breastmilk.  I had to advocate for her to find answers and was blessed to find amazing medical professionals who were well educated on these topics and were able to come up with a plan to help me continue to breastfeed her and allow her to grow and thrive.