May 4th is National FPIES Awareness Day. Three months ago I didn’t even know what FPIES was, and I can bet that unless you are one of our close family members or friends reading this, you likely don’t know what it is either. FPIES stands for Food Protein Induced Enterocolitis Syndrome. Basically, it is a severe allergic reaction in the gut that results in profuse vomiting, diarrhea, and dehydration and can lead to lethargy, blood pressure, and body temperature changes. I am a registered dietitian and thought I knew something about all food allergies or gut issues, yet I had never even heard of this. I checked all my resources and found nothing. There is no known cause, and no cure other than just waiting for the GI tract to mature and praying that they grow out of it. Most kids grow out of it by the time they are 3, some even by18 months if they are lucky!
Sara Mason got diagnosed with FPIES on March 17th.
Prior to that we had been to the emergency room two separate times for the symptoms above. Both times it started about 2 hours after consumption of oatmeal and she vomited and had diarrhea for what felt like hours on end. It was not like when our babies get sick with a stomach bug, y’all. It was much much worse. I was covered, she was covered, Jess was covered, the whole freaking house was soaked in vomit. She got sick until she went limp and pale, almost a gray color, and was ice cold. She vomited until all the food and milk was out and yet she continued to vomit bile. With the second reaction, she even began to vomit some blood, likely from esophagus irritation. She was passed out and would wake up just to be sick and go back to sleep again. This went on for about 4 hours total. Both times she has looked like she was on the verge of death, and then at around the 4 hour mark decided to finally keep some Pedialyte down. As soon as the Pedialyte stays in her system, she is like a new girl! Laughing, playing, singing…. acting like she didn’t just scare the crap out of mommy and daddy and has totally forgotten how miserable she was, other than being a little weak. When this happened at the last ER visit and the doctors got to see the before and after Pedialyte experience, they decided that this couldn’t be your typical stomach bug and referred us out to an allergist.
Dr. Rodriguez was so thorough with us when we got to our first allergy appointment, and he could tell that I was the research type. After going through all the typical questions and exams, he looked at me and said “OK, so what do you think it is?” I responded with FPIES and he said “Bingo! She has all the symptoms.” He went on to inform us that in his 5 years at that specific clinic seeing children with allergies, he’d only seen 4-5 kids diagnosed with FPIES. He told us that the concept of food would change for our family for awhile. We would only need to feed her new foods that weren’t considered “a passed food” in the middle of the day, on weekdays so that we could bring her to the allergy clinic immediately and avoid more emergency room visits. We would have to admit her to the hospital in a year, so that he could retest oatmeal and any other future reactive foods to see if she had outgrown the response. Last and definitely not least, we would be fearful of everything our child put in her mouth for a long long time.
Before all this, when Sara Mason neared the age of starting solids, I couldn’t wait for her to start trying all kinds of fresh and healthy things. I pinned the pins and had the goals of adding spices and flavors and really expanding her palate at a young age. I had so many food dreams for her because it’s what I love– health, nutrition, and creative and fun food. Little did I know that I was going to be using my inner foodie on a whole different level. Dr. Rodriquez instructed us to give her gut a rest for awhile, so we stopped all solids and she got breast milk only until she turned 8 months. (Let’s not even talk about my fears of her having food aversions because of this long wait.) There is not much information out there on this allergy, so there is very little guided instruction. (Again, let’s not talk about how this interfered with my need to control everything and find and follow a protocol to the T— THERE ISN’T ONE!) So our journey with FPIES is basically a wait and see game with every single food.
The crazy thing about this allergy is that she can react to almost ANY food (not just foods with high protein amounts). She could also be allergic to just one food, or to 50 foods. What’s extra crazy is that she can have the food anywhere from 12-14 days before she has an actual reaction- she had oatmeal for about 8 days before the first reaction. So in order to claim any food as a “passing food” it requires consecutively eating one bland, undoctored food at a tme for at least two weeks straight.
The amazing thing about this allergy is that there are other proactive momma’s like me out there who have children who were diagnosed with FPIES. This one mom polled over 200 other FPIES moms on each and every food and whether their child had a reaction to it, so that there would be some sort of database out there about whether certain foods are more reactive than others. She made pie charts with the percentage of kids who passed each food and ranked them so that I can see that 100% of FPIES kids passed brussel sprouts, and only 62% passed green beans. It is truly a lifesaver and I am forever thankful for her effort. If she hadn’t done it, I probably would have. But instead I get to check the pie charts and spreadsheets each time we get ready to try a new food and satisfy some of my inner control freak by choosing foods that are low reactors first! I have also connected with parents all over the world who have children with FPIES. We have shared recipes and stories and celebrated successes. Most of all, they have provided such wonderful support so that I know that I am not alone in my struggles.
It sucks to think about anything being wrong with your baby. You don’t ever want to say ”my baby has ________ disease/illness/allergy.” BUT even though FPIES is very rare, unknown and complicated, I immediately thanked the Lord for letting this be something that
1) she will likely grow out of
2) isn’t anything worse
3) I can handle a lot easier with my extensive nutrition education (and maybe even get a little too OCD about).
I do have days where Jess has to talk me off the edge of the cliff (please imagine being scared to death to feed your child a sweet potato on day 9 because we may have to go to the emergency room as a result), but most days I am very much aware that it could be a lot worse, and am so excited about the progress she has already made. Also, although the main reason that I left my full time job was to come home just to be with her and continue working on Perfect Fit, it was definitely a blessing when dealing with her FPIES. Now each day we are able to try foods in the middle of the day, and I actually have the time to work with her on getting used to textures.
So far we have tried two foods since coming off of her breast milk only diet. She has passed sweet potatoes (which is a huge win!) and is on Day 6 of white potatoes. With sweet potatoes as her only passing food right now, she is getting it often and will likely be turning orange soon lol! So far oats are the only bad guys, but we’ve only just begun. My mom and I are choosing to claim that she won’t have a reaction to any other foods, so feel free to say a prayer and claim it too!
I did not write this blog to draw attention to myself or Jess or Sara Mason. I definitely do not want a pity party. FPIES does not define her and she is otherwise a super sweet and healthy baby girl. Plus let’s face it, I was destined to be that food freak kind of mom anyway… so now we are just taking it up a notch. Jess and I say all the time that if this is all we have to worry about right now, WE ARE TRULY BLESSED BEYOND MEASURE. But I did write this to draw attention to this rare food allergy. There is a great deal of research left to be done related to FPIES in order to hopefully prevent or cure it. The link below will take you to a page where you can donate to the cause, and learn more about FPIES.
http://www.fpies.org/index.php/support-i-fpies/donate-now?view=Contributions
Sara Mason after Pedialyte after her first FPIES reaction on February 2nd… we couldn’t bare to take any pictures of her before