One of the greatest joys of parenthood is marking your baby’s first milestones. Baby’s first smile (or was that just gas?). Baby’s first night sleeping all the way through until morning (even if YOU didn’t sleep all the way through until morning). Baby’s first bite of actual food. For most families, baby’s first bite of food is a joyful experience and memory where the baby either loved it or immediately spat it out and was more interested in finger painting with it.
Unfortunately, some families have a completely different experience. Piper is a baby with an allergic condition called Food Protein Induced Enterocolitis Syndrome (FPIES - pronounced “F” pies), and her family’s experience was a terrifying nightmare. Within hours of being introduced to oatmeal, Piper began vomiting uncontrollably to the point where she became limp and lethargic. Mom called the Pediatrician who misdiagnosed her with the “stomach bug” over the phone. What mom now knows is that she should go to the ER with these reactions. All because of a few bites of oatmeal
Mom remembers that day like it was yesterday:
“I thought that dealing with numerous food protein intolerances (allergic colitis), reflux and an elimination diet for me in order to keep breastfeeding was difficult enough, but adding FPIES to the list was extremely upsetting. She had an acute reaction to oatmeal, one of the scariest things I have ever seen, after only ingesting maybe a tablespoon-worth.”
FPIES is different from other types of food allergies. The mechanism of the allergic reaction in FPIES is not completely understood. It does not seem to be mediated by IgE like other typical food allergies. IgE stands for immunoglobulin E which are antibodies produced by the immune system in response to an allergen. Therefore, conventional allergy tests do not reliably help us identify the foods that trigger the FPIES reaction. One of the hardest parts of the FPIES diagnosis is that there is not a specific test that can tell you what your child will react to and what is a safe food. It’s all trial and error with some educated guessing.
Any food can cause an FPIES reaction - vegetables, fruits, grains, poultry, milk, soy, and egg have all been described as triggers. Children who react to a grain have a 50% chance of reacting to other grains. An FPIES reaction to rice is most common, perhaps because that used to be the first solid food introduced. Egg is less common. Interestingly, if a baby is being breastfed, the mother does not need to restrict the food from her diet – the breastmilk does not typically trigger the FPIES reaction. However, I know many moms who do restrict their own diets once their babies have been diagnosed.
Piper’s mom provides a poignant summary of what it’s like to feed a child with FPIES:
“You begin to hate food and are petrified that every new food you introduce is going to cause another acute reaction. You introduce a new food, hit the timer and wait to see if anything happens. Most people enjoy food, but having a child with FPIES changes it.”
Because of the dramatic and severe nature of an FPIES reaction, you can imagine the fear and anxiety that goes along with each decision about what to feed the child. However, it is essential that the baby progress with solid food in order to develop properly.
For children with FPIES it is easier to think of the safe foods that they can have, rather than all the foods that they can’t have. Families start with one safe food and slowly build from there. Many children have to do food trials with each and every food, advancing teaspoon by teaspoon and testing each food. Cooking and variety becomes very difficult when there are only a few food options and families have to get creative. Our executive chef Lauren Deal created a peach glazed carrot recipe (link here to recipe), and pear chips for another family to try and make the limited foods in different ways so that the child does not get bored with their limited diet.
The good news is that with proper guidance, babies with FPIES can be fed safely. It’s important to work with a practitioner who is comfortable with the FPIES diagnosis and who can lead you down a slow, safe food trial path for your baby. There is a lot of emotion that goes along with these food trials, but with the right guidance you can help your baby with FPIES.
If you or a family member is struggling with the diagnosis of FPIES and could use our help, schedule an appointment with a Kindrd Nutritionist.