We are one of thousands of parents around the globe who's children suffer from Food Protein Induced Enterocolitis Syndrome (FPIES). We are certainly not worse off than some families with this condition, but we're far from being a normal family. FPIES is a condition where our daughter suffers from an allergic type of reaction to the proteins in foods. All foods with any trace amounts of protein in them are a potential risk for her. This means that even fruits and veggies are a potential risk. To make it simple for most people, we say "she's allergic to...." In actuality, it's much more complicated than that. You see, FPIES isn't like a regular food allergy. It isn't detected with a blood test. The only way to know what foods are dangerous for our daughter to eat, are to give her each food on a special trial schedule, and pray that she doesn't react to it. But when she does.... oh boy, it's rough. Really rough. To give you a general idea of what we've been through, I'll start at the beginning. Yes, this is going to be long.
Brook is our pride and joy. We were so happy the day she was born, and I couldn't have asked for a better experience bringing her into this world. From the very first weeks of her life, Brook was a great baby. She didn't sleep great, but what baby does? She had crying periods, but not too bad. She loved to be held all the time, and would get super sweaty. She loved to be in just a diaper being held in front of a fan. Our little "northern" baby as we liked to joke. As the summer finally started to come, my mother in law came to stay with us for the summer. It was a relief to have help, as my husband was working graveyards, and as most people know, a new mommy doesn't get much sleep. Brook began to have crying jags, where she would just cry miserably, and so loud it was concerning. Which was odd for us, since she usually doesn't cry. Everything else seemed fine though, and all of her doctors appointments they said she was perfectly healthy, that it would just pass. Likely a little cholicy. At a few months old, we had a couple bloody diapers, and mucous in a few. We figured she was sick, and the pediatrician said she probably strained too hard. (If this is too much for you, I apologize, but baby poop is literally the center of our lives as FPIES parents, you'll understand why soon.)
By 6 months old, we were ready to introduce Brook to solid foods! I had been nursing exclusively up to this point, around the clock on demand. The break was to be a welcome one. We decided to try a "super food" and introduced avacado first. She didn't want anything to do with it. After several tries, we gave up since she wouldn't even swallow a bite. It's a good thing though, as we would later find out that avacado is one of the high risk foods for FPIES babies. We moved on to rice cereal, the classic standby "perfect first food." The first time Brook ate rice cereal, she did fine. She only ate a bite, so she seemed like she was able to tolerate it. The second day also went fine. On day three, about three hours after she ate it, she went to bed for the night. I of course, was still nursing her to sleep at this point. She was almost asleep, when she then projectile vomited all over me, the bed, and herself. Poor baby, she was miserable. Daddy held he for clean up, and about 20 min in, she proceeded to vomit again. Just the two times. Mind you, she had only had maybe 2 tsp of rice cereal, if that. I figured that her tummy was full, and that the nursing was just too much. We took a break from solids for about a week until her tummy seemed to go back to normal.
The next time we gave her rice cereal a week or so later, it happened again. So we took her to the pediatrician, and were told that she had a stomach bug. That she'd be fine. So we waited, and gave solids another break. Again, the next time we gave her rice cereal she projectile vomited. But this time, she had eaten quite a bit, she was now 7 months old. She proceeded to vomit every 15-20 min for about 2-3 hours. It was horrible. Like something out of the exorcist. (Really, if you imagine an infant going through a forceful choking vomiting session, it's NOT funny.) While holding her at the pediatricians office, she kept vomiting while we tried to find out what was going on. This time, the urgent care doctor thought she might have pyloric stenosis (where the lower part of the stomach narrows and becomes blocked by an enlarged muscle, causing a back up and not letting the food through the stomach into the intestines... it's more complicated than that, but needless to say also very scary). It would require surgery if she did indeed have it. We made a follow up appointment the next day with our pediatrician. He was well aware by now that we had been going through this on a regular basis. He had a different opinion though. He said that we might be looking at something called "FPIES" (pronounced F and pies like apple pies). Simply put, stop giving her rice cereal and move on to something else. If she does it again, we'll look into pyloric stenosis. If not, then she's basically "allergic to rice."
So we did. We moved on. We stopped giving her rice cereal. Her pediatrician gave us a hand out at her appointment saying that children this young are too difficult to test for food allergies, and the best solution is to just avoid the food. The hand out indicated that FPIES was tricky since it couldn't be tested by blood, but mostly by clinical observation of the symptoms. There isn't even a current diagnostic code for physicians to use. (It will be coming out in 2015!!!) And many pediatricians have never even heard of FPIES.
So we were careful moving on to new foods. Giving each new food careful observation when introduced by itself where nothing else new was given at the same time. She went from 7 months to 12 months without another reaction. It is so easy to feel like maybe it was all a mistake, or that nothing is really wrong with your child when you don't see the bigger picture. To be honest, I feel like a jerk. I didn't put the time and effort into researching FPIES and how to manage living with it, until we got her next failed food.
I went to visit some friends, and while I was out, I didn't think anything about letting Brook sip some coconut water from the bottle I was drinking. She'd never had it before, but I didn't think that a liquid could even pose a threat. That same day, she had turkey for the first time. That night about 8 hours later, she woke up projectile vomiting all over everything and everyone. It lasted for hours. HOURS. Every 15-30 min for about 5 hours straight. It was horrible. She wouldn't eat after that. She went a week without eating any solid foods at all. She would only nurse. I had once again become the sole source of her sustenance. She lost 2 lbs in a week. That may not seem like a lot, but when you only weigh 20 lbs, it is a considerable portion of your body weight. To make it worse, for two weeks following her violent reaction, she had horrible diapers. Mucous and a host of other issues that I won't go into. We went through a case of diapers in two weeks. I felt so confused. I didn't know what caused the reaction... the coconut, or the turkey?
I finally kicked myself into gear, and made a follow up appointment with an actual allergist and started doing the research I should have done months before. Her allergist was amazing. She answered all of our questions, and scheduled Brook right away for blood tests. She was too little for a skin test, so they needed to rule out any "real" allergies (the type that show up on a blood test). These tests are for Immunoglobulin E reactions to foods (IgE) and measure the blood level of IgE in response to common food allergies. The IgE antibodies are proteins made by the immune system that attack antigens, such as bacteria, viruses, and allergens. So the more there are, the more likely you are to be allergic to something. But FPIES isn't an IgE response to foods. FPIES is entirely gastrointestinal and is one of many autonomic nervous system dysfunction disorders. This test, would tell us if she had regular food allergies (the kind you treat with an epipen).
The tests were horrible... three people holding her down while screaming as they missed the vein over and over again at two different labs. After an entire morning attempting to draw blood intravenously from our poor 13 month old, they were finally able to complete the test at the children's hospital by taking it from the vein in the back of her hand. The test came back negative for everything. This was good. This meant we didn't have any IgE mediated allergies... no allergies requiring an epipen, and narrowed it down to FPIES. The specialist then met with us for a follow up, to discuss food trials for an FPIES diagnosis and how to proceed moving forward.
There are two groups of symptoms for FPIES. Acute, which are the violent reactions that tell you something is definitely wrong (vomiting, diarrhea, blood or mucous in the stool, foul smelling stool, dehydration, lethargy, shock, weight loss, failure to thrive, hypothermia, hypo tension, abdominal distension, etc.) and then there are chronic symptoms that if you didn't know to look for them, would appear to be just an ill child or one that is "fussy." The chronic symptoms were the ones we knew nothing about. Poor sleeping habits (not just your regular 2-4 wake ups a night, but 10+ each night for MONTHS on end). Chronic hiccups. Eczema type rashes. Sweating. Crying uncontrollably for no apparent reason. Arching her back in pain/discomfort like something is wrong with her stomach. Stomach distension. Moody/irritable. In other words, the symptoms of FPIES had been staring us in the face since the early months after she was born.
As it turns out, Brook has been reacting to the foods that I am eating, through my breast milk. So, I stopped eating rice, turkey, coconut. She started sleeping slightly better. (Not great, but better). She was happier. Things were looking up. Each new food goes through a full two week trial period. She has to trial the food for a full week, then take a short break of three days, then three to four days on again. If she reacts with any acute symptoms, we have to pull the food. If she reacts with two or more chronic symptoms, we have to either push through the pain or pull the food. To make it even more complicated, and here's the real kicker, FPIES has a nifty little trick where if she fails a food (has a reaction) or becomes violently ill with a gastrointestinal sickness, any of the safe foods prior to that time can now pose a threat again. The lining of the intestine basically makes it fair game for reactions again. This is maddening for a mom who wants to wean her toddler on to solid foods. It's like Russian roulette with food.
Since that time, we've discovered she reacts also to straight cows milk (but not to yogurt or cheese, since the proteins in them are broken down enough to not trigger the FPIES symptoms) as well as carrageenan (it's derived from seaweed and in almost every dairy product you can think of). Needless to say, cutting out rice and cows milk are the two hardest for me.
Eating out poses a threat. Eating from anywhere that I didn't make the food myself poses a threat. Did you know that restaurants often put rice in the salt shaker to prevent clumping? Or that pasta, french fries, bread, and other common carb foods are often coated in rice flour to prevent sticking? It's not on the label either, since it's not an ingredient IN the food. Not to mention how dairy is in everything... Reading the labels on foods is not enough. You can see now how FPIES can make eating a stressful event. Many parents in the FPIES support network talk about what we call "accidental exposures" from foods that don't fully list the ingredients. Turns out Brook reacts to rice based maltodextrin too. We quickly found out that taco seasoning contains maltodexrin from one of my favorite places to eat. Rice vinegar, rice flour, rice based maltodextrin... you can see how anything derived from one of her many allergies can become another food she can't eat. In addition, FPIES has shown that if you react to a specific food (like rice for example) that you're likely to react to other foods in that same food family.... so for us, grains are a high risk food. Since she failed turkey, poultry meats are a high risk food.
It's hard enough getting a toddler to eat, let alone having them only eat off of a pre-selected menu of fruits and veggies. (Try to imagine getting a toddler to eat broccoli every day for two weeks!) I can't just feed my kid something on the go. Any time we go anywhere, we have to plan to feed her. Even if it's not a meal time, we have to prepare to have a snack ready. I have to follow her around making sure that she doesn't grab a potentially unsafe food from someone else, or off of the floor. Toddlers put everything into their mouths. Unvaccuumed floors are dangerous for kids with FPIES. I have to be careful not to eat anything with her unsafe foods as well since she's still nursing. This makes family gatherings, parties, and holidays much more difficult for us. On top of all this, I get "the look" from people because I'm still breastfeeding a 17 month old. Yep, I've got reasons I just don't feel like telling every person in the world about. I'm doing what I have to do, to keep my girl growing and fed.
We are lucky in some respects. There are families out there with NO safe foods, where their little ones react to every solid food they have tried. These same children get put on horrible tasting elemental formulas or IV drip feedings. The icing on the FPIES cake is that this disease is misdiagnosed, and often unheard of by many pediatricians. Children can go months, even years, without proper medical attention and care. We were lucky that our pediatrician had heard of it. Most children will outgrow this. Some will not. For now, please just know that if you invite us over and we decline, it's not you, it's FPIES. I know this was a book, and that most people won't read all of it. But if you did, thank you for taking the time to try to understand what we are going through. Today is Global FPIES Day. This is the one day of the year where I will openly post about this to let people know what Brook is going through.
Videos to watch for more information:
Links for more information about FPIES:
