Eating to Grow

This is our aim. To teach Thomas to eat enough by mouth to grow. Now people get confused because they will see Thomas "eating" foods and they don't understand why he needs a G-tube for feeding. Well he is not really eating them. Mostly he tastes the food and chews it up a bit, then spits it out. He rarely swallows bites of food and when he does he usually chokes. Usually he gets so scared from choking on the food that he throws up. It's not fun for anyone. Eating is really hard work for Thomas.

He has an occupational therapist that works with him on his oral motor skills. She has told me she finds Thomas baffling because he has excellent oral motor skills yet he will not eat. In terms of oral development, it is more difficult to take food into your mouth, chew up and spit it out than it would be to just swallow the food!

We believe that his food aversions came from undiagnosed reflux. Thomas did not show the classic reflux symptoms so we went through about five months of periodic food refusal before one of his doctors suggested he may have reflux and put him on an antacid. We did see some improvements but it seems that the association between food and pain had already been made in Thomas' mind. Even after starting the antacid he still went through periods of bottle and baby food refusal that eventually made the g-tube necessary. He was hospitalized several times for dehydration because he refused to drink his bottles.


There is no physical reason for him to have difficulties eating food. Thomas has had every test you can think of and they all came back normal. It is so frustrating to know that he has the ability to eat normally but for some reason chooses not to. But the important thing is that Tom gets the food he needs to grow and thank god we have the option of a g-tube.

Right now, Thomas gets a ready-to-feed elemental liquid formula called Splash by Neocate. It is hypoallergenic and gluten and casein free. In these foods the proteins have already been broken down into amino acids so the food is easier to digest. Thomas suffered from horrible gas as an infant. It is such a shame that there is nothing on the market to treat gas except simethicone products. They were of very limited help to Thomas. I remember calling the nurses at the pediatrician's office and asking his doctors if there was anything they could give him for the gas. Unfortunately, there really isn't anything besides simethicone.

It was not until we got the g-tube and our Early Intervention team signed us up for a nutritionist that we found out there were other feeding options. I had no idea that hypoallergenic foods existed until I met with Thomas' nutritionist!

Now that we know Tom is adequately fed through his g-tube, we are working on getting him comfortable with eating and drinking by mouth. Our method is to continually introduce foods to Thomas in a non-threatening manner. We encourage him to smell, feel and taste the foods. The old school method of just shoving the food in the baby's mouth is the worst thing you can do to a child with food aversions. If you make feeding a negative experience for them they will remember it as such.

So much of learning is visual. Babies learn about their world by observing people and mimicking them. Since Thomas is missing out on that visual information, we encourage him to use his other senses to engage him in food. We eat together and I let him feel my cheek when I chew. And I make a big deal of taking a bite of his food and saying how yummy it is! We have pretty much given up on the high chair for now. It seems like we have better experiences when I just sit down with him on the floor with a bowl of food and we try some tastes together.

We have had a lot of success with the mesh feeders they make for babies. It's a little net that you can fill with food and it locks securely to a handle that the baby can hold. You don't have to worry about little ones choking on a piece of food and it is a good way to introduce foods that may be messy. I find that Thomas will spend more time eating strawberries cut up and put into the mesh feeder than he will when I give him a whole strawberry. And I love being about to cup up fresh fruits for him. He especially loves frozen mango in the summer.

Working on Thomas' feeding issues is a day to day event but we are seeing some slow progress. For now it is enough that he is on friendly terms with food.