Evan was born in May 2011. His life with FPIES really started on day one at the hospital, but we did not have a diagnosis until he was 7 months old. He was a tiny baby and always hungry. I nursed him for 13 months, along with supplement from day 1. Already on his first day, he spit up and vomited so much, his clothes and blankets needed changed very frequent. I mentioned to the nurses that it seems more extreme than normal, and was told that he must just be one of those babies with excessive spit-up. He lost 10% of his weight the first three days, despite nursing almost every hour and receiving supplement every few hours.
Because he also vomited during the night, we kept him in our room close to our bed the first six months, so I could listen when he was uncomfortable and attend to him right away when he was vomiting. Most nights I jumped out of bed several times, to quickly pick him up, to prevent all the vomit to get in his face. Although I tried to be fast, his eyes, nose and whole face would sometimes be completely covered in vomit, almost blocking his airway. So scary. I often had to change his sleeper, swaddling blanket and all the bedding several times at night. I felt so bad for him, and it was exhausting me.
Evan also had foul-smelling diarrhea with mucous in almost every diaper, had reflux, and often seemed very congested, sometimes breathing very loud. His eczema started on his hands and feet when he was only two weeks old, and we tried numerous different ointments. We switched him to many different formulas and I myself switched to soy, and avoided dairy, and it seemed to be even worse. Also, when we switched to soy-based formula for supplementing, he seemed to have even more reactions. Because he was still gaining weight, he was labeled as ‘thriving’, and no one seemed to believe that something was wrong.
At 6 months, we started him on solids, with oatmeal cereal, and he did fine. Two weeks later, we gave him sweet potatoes. Two hours later he started with profuse vomiting that lasted for an hour, over and over again, until it was only dry heaves. He was very lethargic afterwards, looked pale, and felt cold, and it took extra effort to wake him up, and make sure he gets some liquid. Even with his eyes open, he seemed to be out of it. The next day he had diarrhea. We decided to try butternut squash 10 days later, when he was 7 months old, and again, he had projectile vomiting 2 hours later, over and over for 45 minutes, and again, was very lethargic and pale, and had watery diarrhea the next day. At this point, we called the pediatrician, and were told to hold off with solids, except maybe try banana. We were told that we might not have pureed his food fine enough. Fortunately, he does fine with bananas, so we continued giving him those along with the oatmeal. He also slowed down with growth, and at 9 months was weighing what he weighed at 6 months. He dropped from being in the 60s% weight for his age group into the single digits.
By then, knowing, something was very wrong, I started researching on the internet with his symptoms, and kept coming across FPIES. The more I read about it, the more I knew for sure, that this is what poor Evan has been dealing with all along, yet those around me still thought I was making up a diagnosis. I was so glad, when I found out that one of the allergists on The national FPIES Foundation advisory board, has her office not very far from us, so I promptly called and made an appointment at the Kaneland Allergy Center. When he was 9 months old, we received confirmation that Evan has FPIES. What a relief to have a diagnosis and to find a medical person who knows about FPIES! The patch testing and prick testing showed strong FPIES and IgE reactions to numerous foods, including peanuts, soy, dairy, potatoes, sweet potatoes, squash, rice, chicken. Hence, from then on, Evan’s journey has been accompanied with epi-pens and an ER-letter. Since I was still nursing, I went on a partial elimination diet, to avoid the foods I knew so far, that Evan was reacting to.
Along with the allergist, we decided to try the hypoallergenic formulas, of which there are three kinds in the US, for supplementing along with continued nursing. He reacted to the first one we tried with vomiting, and stool in the blood, but did fine with the second one! We want to thank our pediatrician group, for helping us get approval from health insurance to provide us with the formula. It required many, many hours on the phone, and even when we’ve ordered the next 3-month shipment, we’ve encountered difficulty and many more hours on the phone and several weeks of delay. Yet, so far, insurance has sent it to us in the end.
Some photos of the itchy rash, Evan had for many months, at times even worse than shown in these two photos, and bleeding in many spots on his face, hands, and feet. Unfortunately, these are the only photos I ever took when his skin was reacting.
He reacted with vomiting, diarrhea and itchy rash to all the new foods we tried in the last few months. Some days seem so frustrating, yet we thank the Lord that, despite his many difficult days and nights, he has mostly been a very happy child, almost always with a smile, and loves to move. We are so thankful that at 18 months, he has a list of 10 safe foods, although some days we wish it were more. FPIES has certainly taught me to be more creative in making more variety with few foods, although right now he will often only eat if it is pureed! His main nutrition remains the medical hypoallergenic formula EleCare.
Our biggest concern right now is that he picks up a crumb that is not safe, or touches an object that is not clean or not safe for him and then puts his hands in his mouth, or his brother or anyone else gives him unsafe food or touches him after holding unsafe food. He vomited after swallowing a tiny piece of crayon, after licking off some color from a colored pencil, and after swallowing some cardboard and after nibbling on a maple leaf. He loves putting everything in his mouth, which makes it extra scary! Last month, when we were on the road, he accidently received some cow’s milk, and within 10 minutes he had projectile vomiting and was itching everywhere, and within minutes, was covered in big hives, and was lethargic for almost a day. He continues to have frequent itchy rash, but not as severe as in the past, most likely due to so many things he touches and puts in his mouth. Many nights he still screams loud and sudden, not sure if it is due to stomach pain, itchiness, or having difficulty breathing from being congested, or a normal phase at this age …
Our next big challenge: Flying with him to Switzerland to visit family for Christmas 2012. Now that he is very mobile and does not like to sit still, I always get nervous having him in public places, trying to keep him away from everything he reacts to.
Our older son born in April 2009, often had spit-up, and every 10 to 15 days he had an evening of vomiting, ending up lethargic. With him, we just never received a diagnosis, but now I know, they were likely FPIES reactions. He was almost 3 when he had the last reaction. Although Evan seems to react to many more foods, we are hopeful and praying that he too will one day tolerate most foods.
We are so very grateful to The national FPIES Foundation and The International FPIES organization for all their efforts in helping families with FPIES children, and informing others, and for the FPIES support groups online, and to Amanda, for putting together the most informative FPIES reaction summary we have. Most of all, we thank God, for helping us through this path.
Follow Evan’s story here: Evan’s Journey with FPIES
Page published: Nov.30, 2012. Copyright © 2012,The FPIES Foundation