In my last post I talked about my son Nicholas’ eating challenges and sensory issues with food. He’s 100% G-tube fed and hasn’t eaten anything in almost two years. However, in recent months he’s been putting everything in his mouth and starting to explore food again. Now, I want to explain the main reason why he’s had so much trouble.
When Nicholas stopped eating by mouth, we worked on feeding a little bit in therapy, but we weren’t successful. Mostly because of his history with gagging and vomiting.
The gagging and vomiting started with his feeds when he came home from the hospital at 7 weeks old. It didn’t matter what I did, I just couldn’t get his feedings where he was comfortable when he was hooked up. He was always throwing up during feeding time. I tried everything to prevent it, but nothing worked. I tried slowing down his feeds, giving him small, shorter feeds, splitting one feed into two with a break in between. I also tried using a venting bag during his feed, allowing extra air to escape from his stomach. We tried venting him before and after feeds. We gave him certain medications that was supposed to relax his stomach. Nothing worked. It was heartbreaking watching him in pain every day because there was nothing I could do to help him.
The worst part was that he has a Nissen, a band that wraps around the bottom of his esophagus and top of the stomach to prevent him from aspirating if he did throw up. It was frustrating because he’s not supposed to throw up, yet he was all the time.
I was constantly voicing my concerns with his GI doctor, but they were never acknowledged. I finally sought out a second opinion and while his new doctor was better, things weren’t improving. At one point, Nicholas was in the hospital twice in two months for weight loss and failure to thrive. I stopped his feeds in the middle because I didn’t want him to be in pain anymore.
During his hospital stays, we came up with several solutions to make Nicholas more comfortable while feeding. Our plans didn’t work. I learned that some kids have chronic feeding pain and despite having the Nissen, they still vomit. It’s very sad because there’s nothing we could do.
Suddenly, the gagging and vomiting wasn’t just with food anymore; but certain toys, sudden movements, or a knock on the door would make him gag and possibly throw up. We thought he had anxiety. If we went to a new place, he’d get sick when we’d walk through the door.
We finally found a new solution by adding water to his feed because we thought maybe it’d relax his stomach. For the most part, it helped. The water helped during his feeds but unexpected things would still trigger the reflux.
A few months after his second hospital stay, his genetics’ doctor referred Nicholas to an opthalmologist at a special vision school because she was worried about his eyes. He already had glasses for far-sightedness. At his eye appointment, Nicholas was diagnosed with Duane Syndrome; his right eye wouldn’t go all the way to the right and upward. Nicholas would regularly tilt his head upward when focusing on things. We realized that’s how he sees straight. A few weeks later he had surgery to correct the muscles in his right eye.
We saw an immediate improvement with the vomiting and his personality. He was happier and more focused with things. In therapy, he would actually problem-solve much better instead of getting frustrated. His therapists thought he may have been seeing double.
His eye surgery was last summer and it’s helped him in so many ways with his development. He wears his glasses more often, the vomiting has decreased, and he plays better with toys. But we’re really trying to push wearing his glasses because it would help him so much with eating.
Currently Nicholas is intaking the most food hes ever had during his feeds without getting sick. Nicholas is starting to explore foods by mouth and even shows interest in what we are eating during meal times. We hope he continues down this path and improve his tolerance of food.