"Everyone Knows I Can’t Eat"
By Nell Burton

Chad spent most of his first ten months throwing up, and was very underweight. He was hospitalized for a couple of weeks at age three months, because a mystery blood result sent all the docs into a panic. They ruled out all the diseases they could think of, but never came up with an explanation of what was causing the weird result. Finally, in September 1999, when he was almost four years old, he was diagnosed with NDI.

He never, ever ate willingly when small, except for yogurt and custard (which I didn’t even try until he was eight months old, because he was also lactose intolerant). He was never tube fed, because I breastfed him (almost all the time, like drip feeding, until he was 17 months old). His bigwig pediatrician was all in favor of me continuing that way.

I took him to a feeding clinic at a hospital every week in another city, but they couldn’t come up with anything that helped, so we stopped going when he was nearly two years old. I was told he had reflux (when he was three months old), and that not-eating (I started offering food when he was four to five months old) was due to acid pain that accompanied eating. When Chad continued to refuse food, they said either he remembered it used to be painful, or I must be offering it the wrong way. It was so frustrating.

I devised my own system, which has worked very well. He is now up to eating lumpy casseroles, pasta, etc. (He’s 3 years and 6 months). He drinks around 2-3 litres a day (the thirstier he is, the more he eats). His weight and height are now almost average, and iron levels are now normal. His diet has been nutritionally ideal for a long time, although unusual. He was formerly in the smallest 3 percent. He actually grew more between age 2 and 3 years old, than he did between 1 and 2. He doesn’t gag nearly as much as he used to while eating, but cannot add saliva to dry food to swallow foods such as bread. Actually, I can only eat myself by washing food down with plenty of water.

Chad had also refused his cake for his last 3 birthdays. He is opposed to eating anything I haven’t specifically taught him how to eat (which takes ages!). People are always amazed that a child can be so opposed to biscuits, lollies, choccies, etc. And I fantasize about being able to just give him a sandwich. As he hates cereal, and wants beef casserole all day, he costs a fortune to feed.

Although Chad hates food and won’t touch it under any circumstances, he will pick up almost anything with salt (not sugar) and lick it off. I allow it occasionally only because I hate to discourage his only willing approach to food. Naturally people are horrified when he tells them his favorite food is salt!

Part of Chad’s problem is that he just doesn’t understand what it means to chew. I can’t give him lumps big enough that could choke him, but he won’t chew lumps he can force himself to swallow. Anything bigger and he just rejects it altogether. I got him through smooth, pasty, grainy, and progressively lumpy textures over the years, but am just not sure how to progress to the next step. He has never, ever chewed. Of course he watches me, but he thinks he’s chewing when he swallows then makes biting movements after, and doesn’t understand why I’m saying that’s not the same as chewing. (I’ve had his speech assessed on a regular basis, and he’s actually advanced for his age). There are things he likes to lick, but no food that inspires him to have a chew on.

Yes, we actually began with yogurt. It was the first thing he ever accepted (at 8 months old). He added custard when 12 months old. The vanilla version of both was the only thing he ate for many months (plus breast milk and iron supplements). But I soon learned to add minute amounts of pureed fruit, and that’s how he started to eat. Yogurt is still his favorite food. It’s also still the only thing he eats by himself. (I feed him spaghetti, casseroles, etc.) Self-feeding is our goal for August/September, and I have a good idea about how to get it going (I actually discouraged self feeding for a long while because it gave me much more opportunity to change the texture and type of food he ate). After that, I hope to find a way to teach him to bite and chew (after which we’ll hopefully be home and hosed! If only I can think of a way to teach it).

Although having a very verbal 3 and a half year old is a joy, the down side is that he gives me very long, complicated reasons why he can’t, or won’t, eat certain things. It doesn’t help that a couple of friends have labeled him as "not being able to eat," so he argues that "everyone knows I just can’t do it." The only thing I'd change if I’m lucky enough to have more children is that I’d offer rusks and fruit fingers to chew on at age three to four months; well before I bothered about introducing other solids. Chad lost his hand-to-mouth exploration reflex very young (about age four months), so he lacked even the common motivation to chew on food (or even toys). I created our own little system of getting him to use his tongue/lips by giving him water to drink through a straw, then later blowing bubbles through it.