Thursday, December 20, 2012

Finding Balance

Ugh, what to do with a 2yr old CFer that won't eat. This has been going on for far to long. It hasn't ever been a huge issue because he's in a fine range for his height/weight and everyone who sees him says "he looks healthy!" (which I secretly hate - what do you expect him to look like?!). Anyway, last time we were at clinic, his percentiles were dropping. Nothing terribly concerning, but we're working on getting in extra calories. Any calories frankly. He drinks half n half now instead of whole milk. One cup of that gets you about 48 grams of fat. He usually won't eat breakfast now unless its pancakes, waffles or french toast. Forget about it at lunchtime. He use to be a great lunch eater, filling up on high fat yogurt, hot dogs or chicken nuggets, cheese, grapes, whatever. Now he will hardly drink his half n half without a fight. We give him apple juice or Gatorade for a little extra salt, but I try to get a cup of the fatty stuff in first. He might have a snack in the afternoon, he might not. It doesn't seem to matter what it is - cookies, milkshakes, fruit, pretzels - he's simply not interested. Then there's dinner. We started sending him to his room because when we say that its dinner time he throws a fit and won't sit at the table. We even give him the option to just sit with us and not eat his food but he won't do it. His options are sit at the table or go to your room for time out and he quietly complies. We had been offering ice cream or another fatty snack before bed (yogurt or something that looks the same but with far less fat for the rest of the fam, don't worry, we know we don't need it too), but he doesn't want that anymore either. If I get 3 cups of half n half in in a day and nothing else, that's almost 140 grams of fat, but I fee like its not good enough. He's a little on the short side because his body just doesn't get what it needs to grow appropriately on its own, and i can't see to get anything in. Today for lunch he had Goldfish crackers sauteed in vegetable oil. He ate a handful and quit.

I don't think its that's he's not hungry. I think its a control thing. He wants to do what he wants to do when he wants to do it. And herein lies the problem: I'm trying to raise a reasonable contributing member of society here. I don't want him to think that its his way or the highway. I want him to follow rules and understand and respect authority. But I also want him to grow up healthy (CF healthy is very different from non-CF healthy) and that means getting the calories in however I can, which brings me to problem number 2 - bending the rules for him and not the girls. They get what we make for dinner and if they don't like it then they don't eat. They don't get a snack until they finish their meal. They must sit at the table until everyone is done. We have fruit or cheese or yogurt for snacks - healthy snacks during the day (we try). Yet when he won't eat his dinner, which is every day, he gets cookies or whatever he wants. When we do have a treat, he gets the yummy cookie or even two or three if he will eat them, while the girls are strictly limited to the portion I give them. I know that I'm doing what I'm doing with everyones best interests at heart, but they don't know that and I don't like it. I've gotta find balance somewhere. I've started trying to talk to Ella about CF and explaining why he gets what he gets. I also try to make the differences unnoticeable - FF Frozen Yogurt vs the highest fat content ice cream one can buy, with heavy cream added to boot, or baked goldfish crackers vs. goldfish crackers that have been sauteed in vegetable oil. They don't realize that the milk in their sippy cups is dramatically different from one another.

So my problem is twofold - getting a boy to eat and maintaining my sanity and sensability as a mother. Its hard. Any and all suggestions are welcome.


  1. I wish I had a suggestion (other than perhaps going back to see your CF team). I just wanted to let you know that this post really resonates with myself, and my husband. My husband has CF, and his entire childhood was a power struggle over food. He had a lot of stomach pain, but didn't know how to express it, and truly, didn't experience hunger, or enjoy the experience of eating. He has done well with appetite stimulants and exercise (as a natural stimulant), but eating is filled with a lot of hard memories from his childhood of being forced to eat despite the discomfort. It is a challenge in our own relationship, because I won't force him to eat, but it is painful to watch him not eat. Of course, this is different than a parent-child relationship.

    It must be really challenging to balance your son's needs with your other children. One thought is a reinforcement system that all your children can participate in, stickers for complete meals, and so forth, in which a certain number of stickers can be traded in for something special. (For some children, a sticker is enough of a treat)! I'm not a specialist though, I wish I had more suggestions.

    Has the team looked at your son's motility? In adulthood, this was discovered to be the source of my husband's eating discomfort. He also has a lot of problems with acid. These might be areas to explore with his team.

    My heart goes out to you. You are in my thoughts. All the best. <3

    1. p.s. My husband goes through about 2 litres of 10% half and half every other day. It does in everything from tea, to cereal, mashed potatoes, and so forth.