Sensory Processing Disorder: Toby's Story

Melissa Hess shares the story of her struggle getting her son Toby to eat new foods. Toby was diagnosed with a sensory processing disorder, but with the help of the Pediatric Feeding and Swallowing Center at CHOP, he overcame his aversion to trying new foods.

The Day Hospital Intensive Feeding Program is the best thing we ever did to help our son eat.

tobyWhen Toby first transitioned to solid foods, we had a terrible time getting him to eat. He would eat nothing but baby oatmeal, yogurt, waffles, applesauce, mini muffins and at one point, Spaghetti-O's. No meat. No bread. No fruits. No vegetables. And aside from the occasional chocolate chip cookies or animal crackers, no sweets.

He wanted nothing to do with food. And if we tried to starve him out, he would simply outlast us. He wasn't having a lot of health problems yet, but they were coming.

Diagnosed with sensory processing disorder

We first met with the Feeding and Swallowing Clinic when Toby was 2, and we were told he had a sensory processing disorder. We began outpatient work with one of the occupational therapists at CHOP Specialty Care in King of Prussia, PA. The therapist was fantastic and we saw a lot of progress in things that Toby was willing to do, like accept food being put in front of him and actually touch food.

Under the outpatient care, we did add two new foods: crackers with cream cheese and jelly sandwiches. The first time Toby ate a jelly sandwich, I cried. It was progress. It wasn't enough progress, however, and our therapist and the team decided that the Day Hospital Intensive Feeding Program was the best option for Toby.

Setting realistic goals

Our therapist and the team at the Day Hospital told us exactly what kind of results we could expect: that Toby would leave with five to eight new foods, and that he would learn a protocol for introducing new foods.

We were told that it would take a lot of hard work and determination on our part, but that if we stuck to it, we would be successful. We were not promised a perfect eater afterwards, but rather they stressed the reality that we all have things we like and don't like.

We were ready for this, and we went forward with the program.

The team eased us into the protocol, and Toby established a rapport with his therapists very quickly. The team was also very communicative and worked well with us, and I quickly lost the nervousness I was feeling about this program. Watching the feeding sessions three times a day really allowed me to understand Toby's behavior better, and the team really made sure we understood the protocol.

When the four weeks were up, Toby had added at least seven new foods: peaches, pears, bananas, broccoli, green beans, carrots, and spaghetti with meat sauce. We were lucky. It seemed like once Toby finally tried food, he discovered that food tasted good, and most new foods weren't nearly so hard to introduce.

Continuing the program at home

It took a lot of work. We did three snack times a day for six months, and some days it would take three hours out of the day — occasionally (but not often) even more. But after a while, a lot of the foods just crossed over into his repertoire and he would eat them outside of snack time.

It became easier to introduce foods. His diet balanced, he shot up and put on weight, and we were amazed at the change.

We've come a long way

We did the Day Hospital Feeding Program in 2009. Now Toby is 5, and we still marvel at how far we've come. His favorite (non-sweet) foods now are cheese pizza, calzones, bread, ham, meatballs, potstickers and pretty much any fruit you can find.

We do still have our battles. He has his foods he doesn't like and some foods are easier to introduce than others. But I think most parents of small children have similar troubles, and from what I can tell, the arguments we have are typical of the age.

It really struck me how far we'd come when we were walking through Wegman's this December and Toby was hoping that they'd offer a sample of the apple cider bread. They didn't, but did give him a piece of bread with cranberries and oranges in it. He immediately ate it and declared it even better than the apple bread.

When we started this journey, he wouldn't have even touched a piece of plain bread, much less gobbled down a piece of bread with "chunks" in it without a second thought. It was a lot of work, but the payoff has been enormous.

Like I said, it's the best thing we could have possibly done.


By Melissa Hess, February 2012