Ben has been tube fed since birth, and ever since then, we have been determined that he will one day learn to take most of his feeds by mouth.
Ben, however, has other ideas.
Our dedicated occupational therapist has been helping us to work with Ben for the last 2 1/2 years to get him to make the transition to oral feeds. Unfortunately, we go through the following cycle over and over again:
- Ben does reasonably well for a few days,
- Ben then regresses and absolutely refuses all attempts at oral feeds,
- We back off for a few days to a few weeks.
When Ben was a year old, we took him to a feeding specialist at our favorite tertiary care center. Of course, he did really well during that session. Our goal was to get him to eat at least 30 cc by mouth so that we could do a swallow study to make sure he wasn’t aspirating. Unfortunately, we haven’t been able to get him to that 30 cc goal a year and a half later.
Finally, we visited the feeding specialist again 2 days before Christmas 2008, a year and a half after our initial visit. We probably shouldn’t have waited this long. Ben did reasonably well during that session again, the specialist was great, didn’t scold us for not bringing Ben in sooner, and he offered a lot of good, practical advice. He instructed us to keep feeding attempts short (10 minutes) and consistent, offer very limited interaction during the feed itself, until Ben cooperates by opening his mouth for the spoon.
At that point we are to praise him, and offer him a brief reward (e.g. getting to flip a few pages of one of the board books that he loves so much), remove the reward, and start again.
We came home very hopeful, since Ben had done so well that day.
Unfortunately, we have hit another bump in the road; another period of regression. Ben has started to open his mouth less and less, and he gets more and more upset with each attempt. We have gotten to the point where he won’t even take one spoonful in the 10 minutes; he clamps his jaws shut tight, and he shakes his head from side to side. Our feeding specialist is awesome; he is accessible by email. I told him the problems we’ve been having, and he suggested offering Ben a single spoonful, holding out until he cooperates, however long that takes, and then rewarding him with praise and removing him from his highchair and letting him play.
Sounds good in theory, but unfortunately we are afraid that Ben can outlast us. He is a stubborn little guy when he wants to be, and we do have three other kids to attend to. Worst of all, since we started all this Ben hasn’t been his usual happy giggly self, and that makes me sad.
So I’m not sure what we’re going to do at this point. I think we’ll pay another visit to the feeding clinic soon and see what strategies they suggest. If we’re not successful in getting Ben to transition to oral feeds with a home-based program, we may need to enroll him in an intensive feeding program at the feeding clinic which itself isn’t an easy option because it is located an hour away from our home.
Meanwhile, Nate has recently tasted his very first bites of baby cereal. He made it look so effortless. Ben was sitting just a few feet away in his highchair, and was completely unimpressed.
Who knew that such a basic thing as eating could be so difficult for some kids.