When Vincent was 11 months old, he ate a scrambled egg for the first time. He went into anaphylaxis.
Up until that time he had been a great eater. He would try anything you put in front of him and he seemed to like almost everything.
But following the anaphylactic event, he became very orally defensive. He started to eliminate food from his diet and trying anything new was completely out of the question.
After a few months of this, Vincent had lost four pounds and was no longer growing. His pediatrician started him on an oral supplement and that became his primary source of nutrition. He would occasionally have a great day and eat a decent amount but it was always followed by four to five days of eating nothing.
We took him to see CHOP's Division of Gastroenterology, Hepatology and Nutrition, and followed very closely with his allergist, but no one could pinpoint why he had just stopped eating.
With the help of Division of Allergy and Immunology, we discovered Vincent had multiple IgE-mediated food allergies including dairy, eggs, peanuts, tree nuts and rice. Finding “toddler friendly” food that was safe for him to eat was almost as hard as feeding him! Our family couldn’t even eat together anymore because his behavior had gotten so out of control. At this point he was referred to the Pediatric Feeding and Swallowing Center at CHOP.
Intensive feeding clinic
As a parent of four children living a distance that was too far to commute to CHOP everyday for four weeks, it was a hard decision to enroll Vincent in the feeding clinic program. We didn’t really think that he would eat for them.
We expected mealtime at CHOP would be just like mealtime at home — tons of time trying to convince him to eat without success and tons of tears.
I expected that he would be crying for me to save him as he was sent off with a stranger. In my mind this program would be like torture. He would be separated from me and forced to do his least favorite thing in the world!
The anticipation was overwhelming. The night before his admission I actually considered not going.
Learning to enjoy eating again
When we arrived on day one we met a ton of people. Vincent’s primary therapist (who he loved!) gave us an overview of what to expect and I started to feel a little better.
Day one was great, but I still dreaded day two. But, as Vincent was taken back to the feeding room he was fine. He waved goodbye and off he went.
The psychologist assigned to his case sat with me and explained what was happening every step of the way. Someone was always available to answer questions as they came up.
“I was shocked at how quickly he progressed. The program that I had so feared turned out to be working! He was eating multiple foods and he liked them! He was excited to say goodbye to me and go down the hall to take bites with his new friends.”
The hardest part of the program was finding ways to occupy him when it wasn’t time for a meal. We did a lot of walking on the University of Pennsylvania campus and playing outside with other kids who were also looking for something to do between meals. Having the support of other parents going through the same thing was priceless.
Transition to home
When we came home from the program I expected an easy transition since he was doing so well when we left. It took a few weeks of hard work but he quickly realized that he wasn’t going to be able to go back to his old bad habits.
Six months after his discharge he is doing awesome! He eats what the family eats within his allergy restrictions and mealtime is no longer a dreaded event.
Vincent still talks about his feeding therapist and is always excited to see her when we go in for his follow-up appointments. Despite the challenges that came along with his enrollment in this program, it was the best decision that we could have made for him!
By Vincent's parents, April 2013