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?