Charlie was born in February 2011, and right from the get-go, feeding him has been a constant source of fear and frustration. Is he getting enough breast milk? Should we supplement with formula to make sure? Charlie started off in the 1st percentile for weight, and, in the first few days of his life, this affected his heart. A five-day stay in the NICU with some supplemental formula did the trick, and Charlie’s heart was fine and his weight started to slowly go up. Little did we know that Charlie’s issues with food were far from over.
Charlie made slow growth for the first few months of his life and made it to the 8th percentile by the time he was 5 months old. What we held onto was the fact that he was happy and healthy otherwise, with a mild case of what we thought was reflux. At a 5-month check up in July 2011, his pediatrician noticed that Charlie’s weight had dropped. She told us to start rice cereal a month ahead of schedule and to have his weight checked again in a few weeks. Everything went fine, and we quickly transitioned from rice cereal to pears to bananas. When we went back in a few weeks later to check his weight, our pediatrician was not there. A different doctor told us that Charlie’s weight had continued to drop, and that he had failure to thrive. The cure? We were told to feed him more rice cereal.
It had been a few weeks since Charlie had eaten rice cereal, but he ate the mix of rice, apples, and bananas pretty easily. Later, Charlie was upstairs napping and we heard what sounded like someone choking on the baby monitor. We raced upstairs and found Charlie and his crib covered in vomit. Over the next two hours, Charlie vomited 20 more times, about every five minutes. He was exhausted and would only wake up to throw up. We took him in to see his pediatrician, and we told her he had eaten brown rice mixed with bananas and apples about 2 hours prior to when the vomiting began. She was perplexed and told us that those were all foods that didn’t cause food allergies, and that this type of reaction wasn’t a typical food allergy indicator. Plus, by the time we got to the appointment, Charlie had snapped back to life and was his normal happy self again. When she told us he likely had a virus, it didn’t sit right with us, but we had no other information to go off of. We decided to hold off on feeding Charlie any more rice cereal for the time being.
About a month later, Charlie had some rice cereal and peas. Two hours later, it started happening again. This time, we took Charlie to the hospital right away. The ER doctor told us that this was just reflux. We told the doctor that this was completely different from his normal reflux symptoms, but we were dismissed and sent home.
A week later, when the same thing happened, we headed back to the ER. Charlie had been throwing up for over two hours at this point, and he started going limp and cold in our arms. His lips started turning blue, and he was very difficult to wake up. We were quickly shown to a room. The ER doctor ordered a chest and stomach x-ray, which both showed no irregularities. They consulted with a pediatrician, who admitted Charlie to the hospital. As soon as we were checked into our room, Charlie was alert again and eagerly breastfed. The doctors were very confused. When we were discharged the next morning, the pediatrician who was assigned to us said Charlie likely had an allergy to rice and to just avoid it for a while. We followed up with our pediatrician, and she wanted to rule out pyloric stenosis with an ultrasound as well as a barium swallow x-ray. She also referred us to a dietician. That referral was life changing. Right away, the dietitian told us she had started to research rice allergies in preparation for our appointment, and she thought Charlie had something called FPIES.
Despite Charlie’s pediatrician and I both reaching out to multiple allergists within our network, no one in the Northern California area knew how to treat FPIES. We literally had one pediatric allergist tell us, “Yes, your son has FPIES, and, no, I can’t help you.” We found an FPIES message board that recommended Dr. Kari Nadeau at Stanford, and our pediatrician contacted her. Well, it turned out she was busy conducting the research that was recently featured in the New York Times, but we were eventually referred to a colleague of hers in December of 2011. Words cannot describe how it feels to finally meet with a specialist who knows what your child is experiencing. We came armed with a long list of questions and a tremendous amount of hope. We didn’t get nearly as many answers as we’d hoped, mainly because there just hasn’t been enough research done yet on this rare allergy. We did, however, walk away knowing that our family could treat this together and keep Charlie healthy and thriving.
We painstakingly trialed every food ingredient under the sun, and we are incredibly lucky that Charlie is only allergic to rice. It’s amazing, though, how something as “small” as a food allergy can affect everything. Charlie was in so much digestive pain for those first six months that he adamantly refused to do tummy time. This meant that he didn’t develop the upper body strength needed to crawl or sit up. He received physical therapy and is now right where he should be in his motor development. Also, in the 4 month limbo between the time Charlie was diagnosed and the time we saw a specialist, we were terrified to try any new foods. All that we had to go off of was the limited medical research we could get our hands on, and we erroneously interpreted the fact that very few children react to new foods after age 1 to mean that we should just hold off on introducing any new foods until after Charlie’s first birthday. Our allergist later told us we were wrong – few children react to a new food after age 1 because most children have already trialed all foods before age 1. Whoops! Well, this meant that Charlie had been eating purees for far longer than he should have been, and we worked with an occupational therapist to get him eating chunkier, more textured foods. Apparently, eating purees for so long also hindered his speech development. Eating chunkier foods helps develop the mouth muscles needed to articulate clearly, and so Charlie’s articulation was affected slightly. We worked with a great speech therapist and Charlie is now FINALLY finished with all of these support services.
Charlie recently started preschool, which is a terrifying thing for an FPIES family. We send Charlie with all his own snacks and lunches, but what if a classmate has a food product containing rice on his hands and accidentally touches some of Charlie’s food? What if a substitute teacher didn’t get the memo about wiping down the eating areas? Will Charlie notice that he always has to eat his snack alone at a separate table? So far, it’s worked out, thanks largely in part to a very supportive preschool owner and staff. Our next big step is scheduling an oral food challenge. We were given the green light to schedule it anytime between Charlie’s 2nd and 3rd birthdays. With the odds of passing the trial increasing if we schedule it closer to his 3rd birthday, we’ll likely hold off until February of 2014.
Having a child with FPIES has made us a closer family and stronger parents. The most powerful lesson that we have learned from FPIES is to always, always trust your parental instinct, especially when it comes to your child’s health. We were told too many times that this was just a virus or reflux, all while we knew in our heart-of-hearts that something else was at play. We will always be Charlie’s strongest advocates and proudest cheerleaders, no matter what the future holds.
Page published: May 15, 2013. Copyright © 2012,The FPIES Foundation