I’ve been wanting to share this for a while, and since I am getting all the paperwork together to send my son to Preschool in the fall, it’s been on my mind again. I’m hoping that it will help someone else, maybe even someone who is googling, trying to figure out what’s going on with their child. You’ll notice I have exact dates and things in this post. When writing this, I referred to a note I wrote as this was all happening, so I would be able to tell the doctor exactly what happened and when, without forgetting anything or getting confused!
My son has food protein induced enterocolitis syndrome, Also known as FPIES (pronounced f-pies or sometimes fees.) Enterocolitis is inflammation of the small intestine and/or colon. Basically, instead of having an immunoglobulin E (IgE) mediated reaction to a food (itching, wheezing etc.) they projectile vomit repeatedly (though symptoms can be as “mild” as reflux and runny stools.) Symptoms appear around 2 hours after ingestion, but sometimes as late as 8 hours. With the worst reactions, a child can begin vomiting bile, become dehydrated and go into shock (which is what happened to my son.)
The most common triggers are dairy and soy (this includes formula.) Other common triggers include rice, oat, barley, green beans, peas, sweet potatoes, squash, chicken and turkey. Even a very small amount can cause a reaction.
Telling this story will hopefully help explain why I feel the way I do about the introduction of solids, giving 1 food at a time and waiting until they’ve had the food 4 times before introducing another. I know there is a movement towards baby led solids, where purees are skipped entirely & they eat whatever the parents are eating, with no restriction on what they eat, when and so forth. I realize that one person’s experience doesn’t justify a blanket rule or treatment, but we have enough allergies within our family/friend circle to make me paranoid. If I hadn’t introduced solids the way I had, it would have taken far longer to figure out what was going on, and things could have been worse.
My son turned 6 months old on 11/23/09 and we gave him oatmeal cereal (homemade by me) 11/26. Per the usual recommendations, we introduced a new food every 4 days, and gave him avocado, banana and sweet potato. I chose avocado & sweet potato since they are high in fat and nutrient packed, respectively. Since he was “not on the growth charts,” I wanted the most bang for his bite with solids. He had sweet potato for the first time 12/8, then had oatmeal & sweet potato 12/11. On that particular day, he was really digging the solid food and was gobbling it up.
That evening, we were relaxing on the couch about 2 hours after he had eaten. As usual, he had nursed and dozed off, and I was holding him. Suddenly he sat up and vomited more forcefully than I have ever seen before, or since. In the next hour and a half or so, he vomited the same way, repeatedly. I’ve talked before about how we followed our pediatrician to his own practice, and love him. Well, I was able to call him after 9:00 and talk to him to find out what we should do. He told us that it could be a stomach bug, to continue to nurse him, but maybe limit him to a minute or two at a time to see how it went. That if we felt we needed to, take him to the Emergency Room.
My son continued to vomit repeatedly until he was vomiting just bile. What worried me most was that he was completely limp, pale, lethargic & almost glassy-eyed. We ended up taking him to the Emergency Room, and he vomited on the way, and a few more times after we got there. The doctor noted how pale and limp/quiet he was and asked if he was always that way. Um, no. He was (and is) a firecracker & makes more noise and moves more when he’s sleeping than he was at that moment!
The hospital didn’t seem to know what to do. The nurse said “oh I hear he’s been ‘spitting up’ tonight.” Yeah, no. Fortunately she did get to see him vomit bile and know he wasn’t “spitting up.” We were there until about 4 A.M. and they did blood tests, an x-ray and urinalysis. Thankfully, by around 2 A.M. the vomiting had slowed and he was able to keep breastmilk down long enough for them to get a urine sample in the little bag dealie they tape on. PHEW. Otherwise they would have had to cath him. I’ve never been so glad to see urine in my life, as I was when I saw the tiny dribble in that bag! All of his tests came back OK & they sent us home.
We backed way off solids for about a week in case it was a stomach bug, then mostly gave him some foods in a mesh feeder. He had a little bit of apples on a spoon on 12/20, but was leery of the spoon in general (babies are smart, I think he associated the spoon with the vomiting.) The next time he had sweet potato was on 1/9/10. We coaxed him to eat a little bit of apples & oatmeal but he wasn’t very interested. So, we gave him sweet potato in the mesh feeder. (By the way, yes. I did keep written records of what foods he tried and when, I did the same with my daughter and I sure am glad I did!)
About two hours later, he had the same vomiting, fortunately not quite as bad as the first time (he ingested very, very little.) He’d had a “rattle” in his chest since birth, which his pediatrician actually associates with eczema (he called it!) and this time he had a blotchy rash on his cheek too. With the allergies in our family, plus intolerances, I was pretty worried. With my pediatrician’s help, we ended up figuring out that this was FPIES, but went ahead and did a panel of blood tests to check for any IgE responses. We expected them to be negative, and they were.
We waited six months for an appointment with one of the top pediatric allergists in the country at John’s Hopkins. He confirmed that it was FPIES, that the symptoms my son had experienced following the first episode were shock, and gave us instructions on what to do if it happened again (the hospital should have immediately given him IV fluids.) He reassured me that it wasn’t hereditary, and didn’t mean he would develop any IgE mediated allergies. At his recommendation, we were extremely cautious when introducing the other common triggers, but fortunately, sweet potato turned out to be the only one. He is pretty likely to outgrow this, but we’ve decided (also at the allergist’s recommendation) to wait until he is a bit older to do a food challenge. An older child would be able to do it in the office, whereas a younger child would go to the hospital to have an IV inserted & be monitored. Since it’s an easily avoidable food, no thank you.
“While a child may have allergies and intolerances to food proteins they are exposed to through breastmilk, FPIES reactions usually don’t occur from breastmilk, regardless of the mother’s diet. An FPIES reaction typically takes place when the child has directly ingested the trigger food(s).” – Kids With Food Allergies Even so, I didn’t eat sweet potato the entire time I was breastfeeding him, just in case! I haven’t eaten it since he weaned around age 2 either, since like most kids, he wants what Mommy has!
Before this happened, I would introduce a food every 4 days. After, I made sure he was exposed to the food 4 times before introducing another. You may not see a reaction immediately (or recognize it as a reaction) after the first exposure, especially if it was given in very small quantities. If you give one food twice, wait a few days, give another twice, wait a few days, try a third food etc. then go back to the first, or mix them, you may have trouble determining what caused the reaction.
We have family members (and also friends) with very serious allergies such as tree nuts, dairy, gluten and soy, so I’ve learned quite a bit & gotten used to reading food packages. However, I’ve been surprised to see that Sweet Potato is used as a hidden vegetable in some foods, like Happy Baby frozen foods. It’s in Fruitables juice boxes and it’s used as color in some drinks (including a Fuze flavor I used to like as a treat now & then.) I now have to call the company any time a package says vegetable juice is used as color (usually ends up being purple carrot.) I am so thankful that I do not have to deal with a truly life threatening food allergy. I am nervous enough about my son going to preschool and possibly being given a Fruitables juice box & having another reaction. I can hardly imagine sending a child with a peanut allergy to school every day.
Another reason I wanted to share this is because soy and milk based formulas are considered “solids” when it comes to FPIES. Symptoms can include reflux and loose stools, and chronic symptoms can lead to weight loss or slow weight gain. There is no test for FPIES, so it is diagnosed based on the patient’s symptoms. I think it’s something you and your doctor should consider if your child is showing symptoms like reflux, diarrhea and/or weight loss after introducing a milk or soy based formula. (I know when you have a hammer, everything looks like a nail, but it doesn’t hurt to investigate.)
Have you ever heard of FPIES? Do you have food allergies in your family?
Maria wants to live in a world where cloth diapers are the norm and moms can make parenting choices without judgement. When she’s not chasing her 18, 14 and 11-year old kids around, you might find her checking out the latest gadgets, organizing something (again) or exercising in the fresh air. 
Oh my goodness, my little baby has now had three episodes of projectile vomit. How would I know if I am looking at bile? He is almost seven months and was exclusively breastfed. He’s now getting formula and solids. Waiting on nurse from doc office to call back.
[…] He supported all 3 of our “not on the growth charts” children and our son’s F.P.I.E.S. We went to whatever office we needed in order to see him, and were delighted to follow him when he […]
[…] in honor of Asthma and Allergy Awareness Month in May. I am very fortunate that my son’s F.P.I.E.S. is not life threatening if treated, and his trigger is an easily avoided food (sweet potato.) […]
Thank you for your post. My baby girl turned 6 months recently and we began a slow introduction of first foods (she is strictly breastfed otherwise). First was a small amount of bannana, followed by avocado a few weeks later, and finally, sweet potato. she vomitted after all three, but sweet potatoes and bananas resulted in repetitive vommiting 2 hours after she ate. The sweet potatoes were the worse-she threw up until she went limp and fell asleep. I’m pretty nervous to try new foods at this point but I’m just going to take it slow-one food at a time in small amounts and continue to breastfeed. Question-did you find grains to be a trigger? If so, how did you get iron in your in your son’s diet?
Grains were not a trigger, thank goodness! I highly recommend seeing a pediatric allergist with experience w/FPIES. They can help you figure out how to avoid triggers & keep her healthy!
Hi, I know these are old posts but are a life saver to me now. My third child isn8 months old. I have now experienced this strong vomitting reaction to banana, avocado and sweet potato. I am booked in to the paediatrician in 3 days and hope like anything he is familiar with FPIES. I am currently breastfeeding. Just worried about introducing new foods and determining what else she reacts too. She has always been a baby with bad refill pain (currently on Zantac and losec) but I now wonder if foods in my diet are making it worse. Foods I never would have thought of like sweet potato, avocado and banana. I am wondering If you have any updates. Were any other foods discovered. Any tips for what path I need to take from here?
That’s really interesting – my son (the one with FPIES) also had reflux. The ped didn’t medicate him because he was still gaining weight (he called it a laundry issue, not a medical issue), he also has eczema, and had “colic” as a newborn/infant. Babies won’t usually have an FPIES reaction to things in breastmilk, but it’s possible that there are other sensitivities/allergies in play. If possible, I’d suggest getting an appointment with a good pediatric allergist. You might like this site: http://fpiesfoundation.org/
My daughter does in fact have an FPIES reaction to foods in my diet. Our allergist at All Children’s said that this is rare but not surprising to her.
That stinks.
Thank you for sharing. Both my sons have FPIES. My 3 1/2 year old has ‘outgrown’ it, but my 18 month old reacts to a lot more foods and is on EleCare as his main nutrition, and so far, we have 9 other foods that are safe for him. He also has some strong IgE allergies, one of them being peanuts, so the epi pens are our constant companions!
Hope your son soon has no more reactions!
*hugs* That’s very scary. The allergist said FPIES isn’t hereditary but I’ve heard of several families with 2 FPIES kids. My youngest son has been fine so far, but he hasn’t had any typically IgE allergenic foods yet!
Happy I found your post! The exact same thing has happened to my daughter with sweet potato! So bizarre, we’re headed to the ped tomorrow. 1st time 1 month ago, we ended up in the ER. We thought it was a virus. Saturday night the same thing happened, less severe, no ER visit. I am nervous to try other foods now, but we’ll just take it 1 day at a time!
I hope you get some answers! Keep me posted!
Oh man. ((((hugs)))) to you and your family! My DD has food allergies. We started with avocado at 6 months(on the dot, she grabbed food off my plate) and it ended in swelling and hives. I waited a month(and had allergy testing done, which showed dairy, soy, eggs and peanuts- I had known those) and tried apples. We did a small amount of homemade organic applesauce for 3 days. For 3 days she screamed hysterically and on the third day her joints swelled(and then the mucous poop came). I waited 2 weeks to get her back to base line and we finally found a food she could eat- sweet potato. After that my diet was so restricted(and had been since she was 3 months old. After the allergy test the only thing I was eating that she was allergic to was eggs. I had stopped eating avocado after the rxn) due to nursing her that I felt it was pretty safe to feed her off my plate. I was pretty much living on rice pasta, zucchini, onion, mushroom and lamb.
There’s a HUGE list of things that she can’t have at this point. But she’s a happy, *healthy* three year old and all the food restrictions are worth it. Completely. Baby #2 is on the way and at 6 months(or later if s/he isn’t ready) I plan on starting with BLW. But a modified version where we wait a week between introducing new foods and only give one at a time.
That is so scary. I am incredibly grateful that it is only 1 thing, and not something more serious/difficult to avoid. Of all the scary things that come with motherhood, I never thought I’d be terrified of food. My youngest child will be 6 months old in June so it feels like I’ll be playing Russian roulette with food again.
When my middle dd was 6 months old i supplemented with formula due to a low milk supply and we ended up in the er with reactions like your son. We found out she had fpies and eventually we were able to challenge it and as she aged how much she tolerated became larger. At one point an ounce was ok but a drop over and she would start. She can have milk now at the age of 3 but she refuses to drink it. She prefers soy milk.
I recently startrd solids with my youngest dd and she handled oatmeal the first time fine. The second time she had it she nursed about an hour later then threw everything up a few hours later in her sleep. I assumed it was too much in her belly. Yesterday, i have her oatmeal again and she had a very violent episode like my other dd. After about 2 hours of violent vomiting and lots of bile she calmed down and within 2 hours she was determined to nurse and did fine. I chose not to take her to the er here because they acted like i over reacted with my other dd. They just kept saying it was a stomach bug and she would be fine in a few hours. I knew if i couldn’t get fluids in my daughter after a little while i would have to go fight the er. I am scheduling an appt with an allergist to confirm no true allergy but based on her reactions i believe it was fpies. My mother never witnessed my other daughter during an episode and never expected it to be as serious as it is, she witnessed the one yesterday and was in shock how horrible an episode actually can be.
I am so happy to see that after 3 years more information seems to be coming out about this and hopefully it is becoming something pediatricians are becoming more educated about. As far as it being hereditary, I am beginning to question it. I never would have expected 2 of my 3 daughters to be like this. My oldest has an iron stomach and there are no allergies in our family besides the crab allergy my brother has.
Wow, if it’s not hereditary, then that’s a pretty big coincidence. I am not looking forward to starting solids in a few months with my youngest. 🙁
When my middle dd was 6 months old i supplemented with formula due to a low milk supply and we ended up in the er with reactions like your son. We found out she had fpies and eventually we were able to challenge it and as she aged how much she tolerated became larger. At one point an ounce was ok but a drop over and she would start. She can have milk now at the age of 3 but she refuses to drink it. She prefers soy milk.
I recently startrd solids with my youngest dd and she handled oatmeal the first time fine. The second time she had it she nursed about an hour later then threw everything up a few hours later in her sleep. I assumed it was too much in her belly. Yesterday, i have her oatmeal again and she had a very violent episode like my other dd. After about 2 hours of violent vomiting and lots of bile she calmed down and within 2 hours she was determined to nurse and did fine. I chose not to take her to the er here because they acted like i over reacted with my other dd. They just kept saying it was a stomach bug and she would be fine
Wow, I had never heard of this! Learned a lot!
We do baby led solids somewhat, but that just means (for us) that I don’t bother pureeing things that aren’t already pureed. I do introduce foods (including spices) one at a time, spaced out over a few days, just in case. It doesn’t hurt to take to slow, even though we don’t have any allergies in the family.
I’d never heard of this before, but thank you for putting this out there. Gosh, that little face is so beautiful. How heartbreaking!
My husband and I are blessed not to have food intolerances or allergies, and so far, our 18 month old daughter appears to be the same way. Thanks for blogging about this though. It’s good to remember things like these and be on the lookout.
My younger son has a dairy allergy. I had noticed he’d get a little red around his mouth when he had cheese after 11mos, so we held off giving him cow’s milk until he was 15mos. The first cup he had caused him to break out in hives head-to-toe. We saw an allergist, and a skin prick test confirmed that he was allergic. We’ve been vigilant about avoiding dairy in his diet (butter doesn’t seem to cause as much of a reaction as milk, but we still avoid it), but it’s very hard when eating out because restaurants all seem to use butter liberally. We had a scary episode last week where he pulled a glass of milk off the counter and spilled it on his arm. Even through a long-sleeved shirt, his skin swelled and broke out in hives within moments – and that was only from skin contact!
My daughter has celiac and we had similar experiences while trying to determine the problem. unfortunately our dr was not as wonderful as yours. It’s so hard when you’re watching and waiting. Kind of holding your breath between meals. There is much relief in a diagnosis!
Thank you so much for sharing this! My daughter has had food aversions (especially dairy) since birth coupled with eczema & possible asthma. She is full blown allergic to a few things that we haven’t pinned down yet (even after blood & skin allergy tests), which means that we’ve completely eliminated processed foods in our house. The only bright side is that there is so much more information now than there used to be about allergies in general. Thanks again!