Matthew's FPIES Story
Matthew was six months old when he had his first FPIES reaction. He was exclusively breast fed until he hit six months, so we had no idea that anything could be wrong. His poop always had an odd smell - a "buttered popcorn" instead of the "yeast bread" smell that his big sister's diapers had always had. They also looked different - instead of "seedy" they were
more "stringy." But all kids are different, so we didn't think anything of it.
We started Matthew on rice cereal after his six month check-up. Four days into starting Matthew on solid foods my husband left to travel abroad for a two week business trip. I was doing the "single parent thing" with two kids...fighting to get Matthew to "eat" rice cereal was the last thing I wanted to do, so it was put on hold. My sister-in-law came to help out for a week, and I thought she'd find Matthew's "eating" fun, so I pulled out the rice cereal. Two hours after
eating he vomited all over her - not so fun after all. He continued to vomit and dry heave in 5-10 minute intervals for two hours. Between dry heaves he would lay his little head on my shoulder and pass out. He didn't have a fever, but he was really out of it, so I called the after hours nurse - she told me to give him little sips of water in five minute intervals until he could hold it down. It was a struggle to get him to wake up enough to sip the water...after two hours he had taken one
ounce of water, then he was passed out for the rest of the night. The next day he seemed like his happy self, other than four diarrhea diapers. I thought that the breast milk I had mixed with his cereal was the culprit, and decided to give Matthew's tummy a rest and hold off on feeding him again until my husband returned.
A week later when my husband was back we decided it was time to push the rice cereal again. Matthew's reaction was like clockwork. Exactly two hours after eating he started vomiting and dry heaving in 5-10 minute intervals again, passed out on my shoulder, and this time I couldn't rouse him to get any water in him. I was worried and knew something was wrong, but since he had snapped out of it the last time I just laid him down for the night. I now know I should have taken him to the hospital to get an IV, but I didn't realize he was possibly in shock. Instead, I took Matthew to the doctor the next day. I wanted her to know about his reaction to rice, but also that he had diarrhea and hadn't made a wet diaper since before throwing up (he finally made a wet diaper at the doctor's office, 19 hours after his initial reaction).
In the mean time, I went to the computer and googled "vomit rice cereal." I found a page on BabyCenter.com with lots of parents worried about their kids vomiting rice cereal. There were a lot of acronyms I didn't understand on there and passed over - LO, DH, DD, FPIES, EBF, etc. The more I read the more I thought the posts talking about FPIES sounded like Matthew, so I looked up what FPIES was - it was like reading about my son. This HAD to be it, so I wrote down the name and symptoms to ask his pediatrician about FPIES the next day. When I brought FPIES up, the doctor immediately discounted it because of the word "colitis." It wasn't her fault, most doctors have never heard of FPIES...but I wish she would have taken a moment to look it up before dismissing it, because Matthew is a textbook case. We actually were lucky, with the week break from eating (due to my husband's trip) we avoided having Matthew's reaction labeled as a stomach flu. His pediatrician told us to definitely stay away from rice, but to move on to other foods.
So, we started foods again after giving him a few days to recover. We tried peas and he liked them...until day five when he started vomiting two hours after eating them. I called the doctor to ask her advice - she said Matthew was "sensitive" - to stop peas and to try him on sweet potatoes next. Bells and whistles went off in my head, because sweet potatoes are on the FPIES list. I went online to search again, and became more convinced than ever that Matthew had FPIES.
So, I talked to my husband's sister...her father-in-law is a research allergist. When she mentioned what was happening with Matthew she only got out two sentences before her father-in-law said "It's FPIES." My husband and I feel so blessed that we have a family member who could "diagnose" Matthew so easily. We still needed to find Matthew a doctor who lived in our area, but we were pretty certain of the diagnosis. I didn't want to feel awkward again trying to explain FPIES to a doctor, so I called around - refusing to schedule an appointment until I found an allergist who not only was familiar with FPIES, but also had patients with FPIES.
After scheduling the allergist appointment, all of my energy went into trying to find a food that Matthew could eat. I scoured the internet, reading journal articles and blogs...and then one of the blogs linked to a FPIES Facebook page. Where would I be without my FPIES Facebook family? They helped me choose Matthew's next two foods - carrots and potatoes (he passed both). But I was still frustrated - all of the studies only had a handful of solid-food FPIES kids in them. Such a small number of kids meant a limited data set, and I wanted more data to help me choose Matthew's foods and avoid possible triggers. So I came up with a survey to poll what foods the FPIES kids react to. The food list came from an old post on the BabyCenter site, and I posted the survey on both BabyCenter and Facebook the same day our allergist officially
diagnosed Matthew with FPIES. Thanks to all of the parents who filled out the survey, I now have data on over 350 FPIES kids to base Matthew's foods on.
We're three years into this journey now, and it definitely has it's ups and down. I still remember my first trip to the store after getting the official FPIES diagnosis...every food I passed I thought "When will Matthew be able to eat that?" It got harder as I reached the middle of the store and had to start reading ingredients on boxes (I had to eliminate Matthew's triggers from my diet). I finally just had to pull the cart over because I couldn't stop sobbing. A sweet little elderly couple stopped by my cart and talked to my kids while I got it together - they never asked what was wrong, but the wife gave me a sweet pat on the shoulder as they walked away :) Sometimes I'd think we must be crazy, that maybe we imagined FPIES. I fantasized about just grabbing a grape off of our daughter Abby's plate and giving it to Matthew. How could one little grape hurt anyone? I would never do that, but I just wanted to have fun feeding my baby new things like other moms. Then we'd fail another food and it all came back to me....why we had to be so careful and that I'm not a crazy mom, I'm a responsible mom. We had Matthew's first birthday party, and he didn't have cake. It took a while for me to see past the cake, to realize that we were the ones who this bothered, not Matthew. To see that he was thrilled to have people singing for him and entranced by the candle, and that his smile was just as big as it would have been with a cake. And I'll never forget when Joel was two weeks old...the feeling in the pit of my stomach staring into Nick's eyes as we both smelled that unwelcome familiar smell, buttered popcorn poop. The realization that just when we were seeing the light at the end of the tunnel for Matthew, Joel was starting down the same path. But we were awesome the second time around...I identified rice and soy as possible triggers through my milk, and he never had a fussy night. Not one single day where he was fussy or upset...just a happy baby with a happy tummy. And then the last glimmer of hope disappearing when Joel reacted to the first food we gave him.
I feel much more confident dealing with FPIES now. It's still scary, and I still get that feeling in the pit of my stomach WAY too often, but I don't feel in the dark when I'm choosing which food to trial next. We know that there will be an end to this...that we are blessed that our child does not have a life long allergy. Our goal is to get him through these next few years hitting as few triggers as possible, until FPIES is in our past.
more "stringy." But all kids are different, so we didn't think anything of it.
We started Matthew on rice cereal after his six month check-up. Four days into starting Matthew on solid foods my husband left to travel abroad for a two week business trip. I was doing the "single parent thing" with two kids...fighting to get Matthew to "eat" rice cereal was the last thing I wanted to do, so it was put on hold. My sister-in-law came to help out for a week, and I thought she'd find Matthew's "eating" fun, so I pulled out the rice cereal. Two hours after
eating he vomited all over her - not so fun after all. He continued to vomit and dry heave in 5-10 minute intervals for two hours. Between dry heaves he would lay his little head on my shoulder and pass out. He didn't have a fever, but he was really out of it, so I called the after hours nurse - she told me to give him little sips of water in five minute intervals until he could hold it down. It was a struggle to get him to wake up enough to sip the water...after two hours he had taken one
ounce of water, then he was passed out for the rest of the night. The next day he seemed like his happy self, other than four diarrhea diapers. I thought that the breast milk I had mixed with his cereal was the culprit, and decided to give Matthew's tummy a rest and hold off on feeding him again until my husband returned.
A week later when my husband was back we decided it was time to push the rice cereal again. Matthew's reaction was like clockwork. Exactly two hours after eating he started vomiting and dry heaving in 5-10 minute intervals again, passed out on my shoulder, and this time I couldn't rouse him to get any water in him. I was worried and knew something was wrong, but since he had snapped out of it the last time I just laid him down for the night. I now know I should have taken him to the hospital to get an IV, but I didn't realize he was possibly in shock. Instead, I took Matthew to the doctor the next day. I wanted her to know about his reaction to rice, but also that he had diarrhea and hadn't made a wet diaper since before throwing up (he finally made a wet diaper at the doctor's office, 19 hours after his initial reaction).
In the mean time, I went to the computer and googled "vomit rice cereal." I found a page on BabyCenter.com with lots of parents worried about their kids vomiting rice cereal. There were a lot of acronyms I didn't understand on there and passed over - LO, DH, DD, FPIES, EBF, etc. The more I read the more I thought the posts talking about FPIES sounded like Matthew, so I looked up what FPIES was - it was like reading about my son. This HAD to be it, so I wrote down the name and symptoms to ask his pediatrician about FPIES the next day. When I brought FPIES up, the doctor immediately discounted it because of the word "colitis." It wasn't her fault, most doctors have never heard of FPIES...but I wish she would have taken a moment to look it up before dismissing it, because Matthew is a textbook case. We actually were lucky, with the week break from eating (due to my husband's trip) we avoided having Matthew's reaction labeled as a stomach flu. His pediatrician told us to definitely stay away from rice, but to move on to other foods.
So, we started foods again after giving him a few days to recover. We tried peas and he liked them...until day five when he started vomiting two hours after eating them. I called the doctor to ask her advice - she said Matthew was "sensitive" - to stop peas and to try him on sweet potatoes next. Bells and whistles went off in my head, because sweet potatoes are on the FPIES list. I went online to search again, and became more convinced than ever that Matthew had FPIES.
So, I talked to my husband's sister...her father-in-law is a research allergist. When she mentioned what was happening with Matthew she only got out two sentences before her father-in-law said "It's FPIES." My husband and I feel so blessed that we have a family member who could "diagnose" Matthew so easily. We still needed to find Matthew a doctor who lived in our area, but we were pretty certain of the diagnosis. I didn't want to feel awkward again trying to explain FPIES to a doctor, so I called around - refusing to schedule an appointment until I found an allergist who not only was familiar with FPIES, but also had patients with FPIES.
After scheduling the allergist appointment, all of my energy went into trying to find a food that Matthew could eat. I scoured the internet, reading journal articles and blogs...and then one of the blogs linked to a FPIES Facebook page. Where would I be without my FPIES Facebook family? They helped me choose Matthew's next two foods - carrots and potatoes (he passed both). But I was still frustrated - all of the studies only had a handful of solid-food FPIES kids in them. Such a small number of kids meant a limited data set, and I wanted more data to help me choose Matthew's foods and avoid possible triggers. So I came up with a survey to poll what foods the FPIES kids react to. The food list came from an old post on the BabyCenter site, and I posted the survey on both BabyCenter and Facebook the same day our allergist officially
diagnosed Matthew with FPIES. Thanks to all of the parents who filled out the survey, I now have data on over 350 FPIES kids to base Matthew's foods on.
We're three years into this journey now, and it definitely has it's ups and down. I still remember my first trip to the store after getting the official FPIES diagnosis...every food I passed I thought "When will Matthew be able to eat that?" It got harder as I reached the middle of the store and had to start reading ingredients on boxes (I had to eliminate Matthew's triggers from my diet). I finally just had to pull the cart over because I couldn't stop sobbing. A sweet little elderly couple stopped by my cart and talked to my kids while I got it together - they never asked what was wrong, but the wife gave me a sweet pat on the shoulder as they walked away :) Sometimes I'd think we must be crazy, that maybe we imagined FPIES. I fantasized about just grabbing a grape off of our daughter Abby's plate and giving it to Matthew. How could one little grape hurt anyone? I would never do that, but I just wanted to have fun feeding my baby new things like other moms. Then we'd fail another food and it all came back to me....why we had to be so careful and that I'm not a crazy mom, I'm a responsible mom. We had Matthew's first birthday party, and he didn't have cake. It took a while for me to see past the cake, to realize that we were the ones who this bothered, not Matthew. To see that he was thrilled to have people singing for him and entranced by the candle, and that his smile was just as big as it would have been with a cake. And I'll never forget when Joel was two weeks old...the feeling in the pit of my stomach staring into Nick's eyes as we both smelled that unwelcome familiar smell, buttered popcorn poop. The realization that just when we were seeing the light at the end of the tunnel for Matthew, Joel was starting down the same path. But we were awesome the second time around...I identified rice and soy as possible triggers through my milk, and he never had a fussy night. Not one single day where he was fussy or upset...just a happy baby with a happy tummy. And then the last glimmer of hope disappearing when Joel reacted to the first food we gave him.
I feel much more confident dealing with FPIES now. It's still scary, and I still get that feeling in the pit of my stomach WAY too often, but I don't feel in the dark when I'm choosing which food to trial next. We know that there will be an end to this...that we are blessed that our child does not have a life long allergy. Our goal is to get him through these next few years hitting as few triggers as possible, until FPIES is in our past.
