Our Story

So here is an abridged version of "our FPIES story." Everyone has one, it seems, and it is crazy how similar they can be, even with all of the unique details that go along with each child.
B was always a "fussy" (or outspoken, as I like to say!) baby from the get-go. By about three weeks old, she was starting to show signs of reflux and having quite a bit of sleep disturbances-- screaming for up to 6-8 hours at a time, screaming so hard she would stop breathing, restless sleep, and she would only sleep a total of about 6 hours in a 24 hour period. Just before turning a year old, she finally began taking a daily nap and sleeping about 9 hours at night (waking every 2 hours or so to nurse).

It is so funny to look back on those days-- we had a handful of unexplained episodes of projectile vomiting without any accompanying symptoms that make me wonder if this FPIES "Adventure" wasn't already beginning. All of her behaviors make so much more sense to me in retrospect.
The doctors didn't diagnose her reflux until she was 5 months ("she can't have reflux-- she is gaining so well!") and they didn't medicate her until 14 months.

In the meantime however, I have an AWESOME friend (you know who you are!!) who helped me with ways to try changing my diet and also to try some non-medication reflux "assistance"-- propping the crib legs with books, laying B down to sleep on her side, etc etc. This definitely helped some, but even more helpful than this were wonderful words of support, giving me "breaks," and help with slinging (my lifesavers were the mei tai and maya slings!!!) This was extra helpful since my husband was deployed from the time B was 2 months until just before she was 6 months, then again from 7-9 months old.

The older B got, the screaming did get a little less and she was (thankfully!) quick to learn how to roll over, sit up and "ooch" and crawl. I really think this helped her reflux at least somewhat.

When DH got in from the summer deployment when B was about 6 months old, we decided to try some solids. Everyone told us that this would surely be a great solution to her reflux. Three tries of rice cereal later, all three accompanied with vomiting FPIES reactions and worsening reflux overall, along with the lovely diarrhea, I began to question what was going on. The delayed reactions struck me as odd (5 hours first time, 4 hours second time, 2.5 third time) so I googled "rice cereal" and "delayed vomiting 5 hours" and voila! FPIES popped up!

Fortunately, our ped at the time was fairly receptive and looked at the FPIES info I brought to him, listened to B's perceived "reaction," and agreed with my assessment as a strong possibility. He wasn't familiar with FPIES, but we both did some research and it was decided to continue with solids, avoid rice cereal and any other common FPIES triggers. Well, I didn't research well enough because the common trigger list I found did not list sweet potatoes.

Bananas and pears were passes (though pears took MONTHS for her to be able to eat more than 1 ounce at a time without resulting in non-FPIES diarrhea) but sweet potatoes were a big FAIL. At the time though, I didn't know what was going on-- it took at least 16 ingestions to produce a severe, repetitive projectile vomiting episode, but looking back, she had SEVERAL minor reactions leading up to it. That entire period beforehand, she did not sleep. Hardly at all. We stopped co-sleeping then, thinking maybe she wanted more space or something. We were really grasping at straws. I remember calling the doctor's office and reporting that the only thing that solid foods were doing for B's reflux were making it orange and increasing it. She had constant diarrhea, which we initially thought was teething, but since she didn't really have other teething symptoms and her first tooth didn't come until she was 13 months old, it seems unlikely now that it was anything other than a reaction. She also was doing this bizarre sucking behavior whenever I would hold her (which was often, because she screamed a lot around this time)-- she would suck on my shoulders and arms so hard that I had bruises covering my arms. I know now that she only does this when she is reacting to something. I think she equated sucking with nursing and since she was always a comfort nurser, I think it was her way of trying to feel better. And all of this led up to the biggie reaction--- vomiting 2 hours after ingestion, projectile vomiting every 5-10 minutes for about 2 additional hours, followed by 12-18 hours of diarrhea diapers. At this point, she had recently had a minor reaction to carrots so we decided to stop all solids for a couple of months.

We restarted with bananas and then pears and then apples, but apples seemed to give her troubles (we tried ALL forms!)-- diarrhea and always a horrible diaper rash, even when the diarrhea was not as pronounced. Then we tried to trial white potatoes but she would not touch them with a ten foot pole. After a few days of nothing passing her lips without being immediately spit back up, we abandoned these and decided on Kix. Really the Kix trial came out of nothing more than a desire to have a safe finger food. I was preparing for a surgery that would take me away from B for at least 12 hours and she was very fussy about taking breast milk from a cup or bottle, so we knew she needed something. Kix was not an immediate pass--- big texture issues, but no FPIES reaction. A few weeks after we got back from my surgery (we went to the states for this), we tried peaches, which produced a minor fail by day three and blueberries, which produced a minor fail by day 5. (Our minor fails include behavior changes, increased reflux, and diarrhea). Blueberries however caused diarrhea for the week she was eating them and for another 1.5-2 weeks following, accompanied by a horrific diaper rash that required RX cream and another week to resolve. Shortly after that she reacted to the generic zyrtec (the grape flavoring we later deduced), so we took another bit of time off from all foods, restarted a couple of weeks later, and once all of our safe foods had been reintroduced, we trialled arrowroot-- an immediate success! I had started using masa (a special corn flour) and now I could make a cookie recipe for B!

After a few weeks of success with arrowroot, we trialled avocado. Our food trials are three weeks long, so we start out with super small amount of food. By day 12, and only after eating 1/4-1/2oz of pureed avocado, B had a severe reaction 5.5 hours after ingestion. My warning sign? Ever since she began the trial, she had worsening episodes of hiccups. The day before she reacted, I remember walking away from the train station and hearing the hiccups from B in the stroller and thinking to myself how "wet" they sounded. The avocado fail landed us in the ER twice. The first time, they gave B zofran to stop the vomiting, but I actually think that is what made her reaction worsen. As her ped said, kids vomit for a reason-- to get something out of their system. I think the zofran somehow made the avocado stay in her body longer, thereby worsening the reaction. A few hours later, after nursing her before bed, the projectile vomiting began AGAIN and this time it was hi-liter yellow and after about the 5th time of vomiting (in about 15 minutes) she lost consciousness and could not be roused. B is a raging insomniac. She has stayed up for three days straight before. I am willing to bet we were on a fast path to shock, but the docs never believed me.

So we called the ambulance and went in to the ER again. They tried to do blood work but it took them forever to get a vein, which now I am guessing it was because she was hypotensive. She had so many symptoms of this in addition to the difficulty with the vein so. . . . They told us the bloodwork was normal (which I later found out that it WASN'T) and sent us home.

For a month  following this severe reaction, B continued to lose weight and seemed to come to a halt in her developmental milestones (no real progress with the walking, which was really coming along, etc etc). The docs all dismissed her weight loss, saying that it was the fault of all of the different scales, even though I checked her numbers when weighed on these different scales before when she was healthier and her weight was the same on each one. We were trying to keep her on some solids-- no new foods, but sticking to the corn and banana foods, although all of her solids were passing right through her and it was evident to us that she wasn't retaining much of the nutrients from her diet. We eased up a little more on the solids and by almost exactly a month post-reaction, she stopped losing weight, though she was not gaining, and foods stopped passing through her in state.

Fast forward to today. Since avocados, we have had two minor reactions-- one to carrots and one to squash (which I think would have turned severe had we persisted). We are finishing up our spinach trial and passed quinoa right around Mother's Day. In less than 48 hours from when I am writing this, we will be seeing a specialist for the first time to help in addressing B's FPIES. It has been a long and wild journey and I am hopeful that we are sailing ahead to smoother waters. B is still a toddler, food issues or no food issues they are all so similar, and is CRAZY picky so food trials are brain numbingly difficult (haha) but we will get through. Everyday is a new day and hopefully every day brings us a little closer to better understanding what is going on in B's little body and what we can do to make her days happier, healthier and closer to a shade of normal. I really hope that this blog can help bring peace of mind and a sense of comradery with other parents dealing with the craziness that is FPIES; I hope to do this through one of humankind's biggest comforts-- food! Food is such a battle for all of us in the thick of FPIES, so please try to have fun with the recipes on here and let me know if there are any you would like me to try and come up with for your little ones. I want to help B and all those little ones out there just like her! Welcome to B's FPIES test kitchen! Sit back, grab a sippy cup, and enjoy some of the "close to normal" recipes on our site!