I have never had a problem eating. Ok, I shouldn’t say never. I had food poisoning once, and I had a really hard time eating for a few days after that. But throughout my life in general, eating has never been an issue. I have friends who claim they forget to eat sometimes. Uh…. How on God’s green earth does that happen?!? I forget to not eat sometimes… on more than one occasion I have had to reschedule medical tests because I ate when I wasn’t supposed to. But forgetting to eat? I don’t buy it.
So imagine the bewilderment that fell over me as I watched my son refuse food over and over, day after day. It’s not that he wouldn’t eat anything, but two bites of popcorn does not equal a day’s worth of food, even for a little dude. His EOE means that certain foods cause his immune system to mount up a defense that rivals assembling the Avengers. As it turns out, that’s enough to turn someone off from eating very much. He takes what he needs from his formula and doesn’t bother with the rest.
Obviously we want him to eat. Long term, we really hope he can learn to eat and love the foods that he can have. In the meantime, though, here’s what we are hearing from his medical team:
If he wants it, give it to him! Now, obviously, this is a “within reason” situation. He needs to learn that he doesn’t always get everything he wants immediately when he wants it. But if he wants an Oreo and it’s a safe food for him, go ahead and let him have it. He needs the calories.
Don’t force it. It’s ok for him to play with his food. Good, even. Just don’t force him to eat. Forcing him to eat will reinforce/exacerbate his negative association with food. Touching food, playing with food…. All that will give him a chance to get more comfortable with the idea of food.
Get him to eat as many high-calorie foods as he will eat. I somewhat sheepishly told his dietitian about the Coconut Oil Chocolate Drops I made for him, certain I would be chided for giving him all that sugar. She actually was impressed, saying that a good high-calorie snack like that is exactly what he needs.
Know that none of us have all the answers. This EOE thing is pretty rare, and even the experts are still learning. Everything is very “trial and error,” and what works for one patient may not work for another. What triggers a reaction in one person may be completely benign for another.
Bottom line is this: You may feel like Sisyphus pushing the boulder up the hill, but don’t give up. You got this. Trust your doctor(s), but also trust your instincts. It’s ok to be tired. It’s ok to not have the answers. It’s ok to be frustrated. It’s also ok to reach out, to lean on your support network. If you don’t have one, build/get one. If you don’t have anywhere else to go, I’m here, and I’m listening.