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FPIES in babies

I still need time (and lots of it) to complete our story, but in short, I was sent home with my baby on palliative care and decided not to give up on him. This meant that I had to figure out a lot of things on my own. Food Protein Induced Enterocolitis Syndrome “FPIES” was one of them. I wish I knew someone who could sit and share details about this rare food allergy and how to go about introducing new food items to my little one. Thankfully there were other moms who shared their journey on different platforms and who also seemed to have a difficult time finding medical professionals who knew about FPIES. They may never know who they are, I’m thankful they documented and shared their stories. I’m also sharing what I've learnt thus far about this rare allergy, our story, and some resources, with hopes, that it’ll also assist someone else.

 FPIES Food Allergy

Soo…. What is FPIES?

FPIES is a rare food reaction/food allergy that affects the gastrointestinal tract of infants and young children. In my search to learn more about FPIES, I found that there aren’t that many studies about this topic and most of them are quite recent. It seems that FPIES is not exclusive to children. There is no data on the prevalence of FPIES in the US but based on published reports in the last decade it estimates that 0.5% children and 0.2% of adults are affected by FPIES (Norwak-Wegrzyn, et al., 2019). FPIES is a non-IgE mediated food allergy. These food allergies are a group of disorders characterized by chronic inflammatory processes of the gut while IgE mediated food allergies may result in multi-organ system anaphylaxis. IgE mediated reactions typically occur immediately after ingesting a food item, while there is typically a delayed reaction with the latter.


What are the symptoms?

The symptoms of FPIES are often delayed, which means there is no immediate reaction and they usually start a couple hours after ingesting the food item (this is typical for non-IgE food allergies). Symptoms can start as early as 1 hour but as far as 4 hours after ingesting certain “trigger foods". Symptoms include stomach cramps, eczema/skin rash, spit up, vomiting, bloating/gas, reflux, diarrhea, and irritability. Acute FPIES symptoms include vomiting, diarrhea, dehydration, fatigue and in some extreme cases children may need fluid for dehydration. While every child is different, there seems to be certain foods that are common triggers. The most common food triggers include for example cow’s milk and rice. It is believed that some kids can also experience reactions to trigger foods via breast milk.


How is it diagnosed and treated?

Unfortunately, FPIES can’t be treated but it can be managed by avoiding the trigger foods, periodically reevaluating those items and creating a personalized diet for your little one (of course with support from your child's pediatrician). Symptoms usually resolve once the trigger food is removed all together.

Diagnosing FPIES can be tricky, it is a non-IgE mediated food allergy which also means there are no blood or skin allergy test to confirm this food allergy. The diagnosis is made after considering the child’s history of symptoms. That's why it's important to keep a food journal for your little one.

I created some free FPIES templates to help you and your little one on this journey. Click here to download

Our journey with FPIES

While I am not a medical professional, a lot of my son’s care was left up to me when we first returned home. During his hospital stay he had major issues digesting regular baby’s formula. His symptoms included severe acid reflux and vomiting and it just seemed like a vicious cycle where they kept giving him more Nexium as his intake increased. He was also having trouble gaining weight. I voiced my concerns very early on and inquired about the formula he was given, as I suspected he was having difficulties digesting it. While I am not lactose-intolerant, I don’t drink cows’ milk and very rarely use dairy products (with the exception of ice cream). I also remember my mom telling me that at some point when I was a baby, I had soy milk and did not do very well on regular baby’s formula.


Once we were home and I saw his symptoms persisted and got worse I decided to, well, do the best I could as a mom. He seemed hungry quite often and he’d be so uncomfortable (crying, vomiting, extremely gassy) before and after having a bottle. I learnt about the proteins in baby formula and what is easiest for baby's to digest and switched him to Alimentum (liquid version) after much research and things started to improve. Now if you’re a mom or dad that has had a baby on the bottled version of Alimentum, you’d know it goes fast and its expensive, but it was worth it. I eventually went a step up and tried a hypoallergenic formula. I needed a back up that I could find locally because during that time there were some recalls and for a minute, we could not get a any Alimentum. Baby formula was scarce, to say the least. He did well on the hypoallergenic formula, so we stuck with that for a while but there were also trials with other baby formulas in between. Now he's on Lactogen.


Now I’m fast-forwarding here but at one point I tried adding rice cereal to thicken up his milk and add more calories...that was a disaster. He cried, threw up and was just uncomfortable. Unsure about what was happening, I decided to stop the cereal trial. We ended up back in the hospital and a nurse suggested I add rice milk based on the pediatrician suggestion to add cereal to his bottles. I informed the nurse on shift that I wasn’t too sure because I tried once before, and he did not tolerate it well. I reluctantly tried and well round two did not go well either. The nurse on the following shift told me to follow my mommy instincts next time. As a first time mom, I was often hesitant. Rice or any derivatives of rice were on my radar from that point on.


Once we started giving my little boy baby foods, I chose high calorie purees in my efforts to help him gain weight. Sweet potato is high in calories and it’s healthy, so that was one of my first choices and I quickly noticed that while he ate it, a couple hours after he had tummy ache, vomited, and it also seemed to aggravate his acid reflux. So, the trials begun, I’d try different foods and I started making notes of foods he tolerated and foods he didn't. There were certain foods that it took a few tries before I realized he was not doing well. With all my notes I started to see patterns and created a list of what foods/ingredients were safe and what were not. While searching with my notes I found FPIES and from there I learnt that a hypoallergenic diet is also recommended for kids with FPIES in part because it is easier on their digestive system.


I learnt that there were "safe" and "trigger foods"with FPIES. Each child reacts differently but there seemed to be a consensus about foods that would likely cause a reaction and foods that were probably "safe" or low risk. Most importantly, I learnt that as babies get older, their digestive tracts improve/mature and so does their tolerance. Based on all the posts I've read it seems to get better from age two. There was a time that the only fruit my little boy seemed to tolerate was pear and specifically Beechnut's brand because it only contained one ingredient: pear. Many of the other brands contained lemon juice concentrate (or lime) and these were also ingredients I avoided because he’d always have issues after consuming them. While most baby foods have something acidic (I guess as a preservative) I was able to find a few from beechnut that didn't.


An important tip when dealing with FPIES is to try one ingredient at a time. Start with single fruits/ vegetables usually stage 1, serve it several days and try it several times. For example maybe pear as a desert for three days in a row, if it goes well pause and do another round of three. I'd also suggest you start with low risk foods which may include food items such as watermelon, quinoa, broccoli and hold off on high risk food ingredients.


FPIES in Babies

The first grain I tried after reading an article was quinoa. That went well and so with very few options I had to get creative with baby food options. After every trial I'd happily or regretfully add to his list. I kept the list on my phone, so I'd always have it on me. There were times where I was unsure and those ingredients would end up into a category of their own. My son is 21 months old and I still haven’t tried rice, sweet potato or cows milk but I have done some retrials. There was a time he had very few safe foods and his list looked something like this.


Safe:

Pear

Quinoa

Prune

Blueberries

Tapioca

Broccoli

Avocado


Unsure:

Apple

Raspberry

Sweet peas

Banana


Not Safe:

Rice

Sweet potatoes

Carrot

Green beans


Now it took us some time to get to those 7 safe ingredients. I had to get creative with the few ingredients that I kept them on rotation.


For example he'd have


- Pear puree

- Broccoli puree

- Quinoa puree (salt)

- Quinoa puree and milk with sweetener (like a porridge)

- Quinoa puree and milk with a little salt

- Quinoa and broccoli puree

- Quinoa and pear puree

- I may have also tried pear and broccoli puree


I’d tried to get as creative as I possibly could. Then I was able to add avocado and plantain and a few more things. We can’t have it all but we definitely have more options. Oh and by the way he does not want to see any pear. I think he’s all “peared” out, but he ate it by the dozens. So moms, if you’re at the beginning stage of food trials just letting you know that you are not alone, be patient it gets better. I also got a multivitamin from a pediatrician that's been assisting us. Which leads me to my next tip, please see your pediatrician if you suspect that your child may have FPIES and create a plan with them. In some cases it’s great to also have pediatric gastroenterologist and/or pediatric nutritionist or dietitian to accompany you and your baby on this journey for nutritional support.


  • Here are some articles that helped me


  • There is an FPIES support group on babycenter community.

There was also a spreadsheet with high and low risk food items based on trials.

If I do find it I'll link it here but it was pretty handy and this lead to me trying plantain.


  • I also created some printables you can use for tracking your baby's journey that you can find here on my site for a small fee.




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