I recently wrote an essay for Tribe Magazine titled,”The Heartbreak of a Picky Eater.” In it I talk about how difficult it is to have a child that refuses to eat no matter how hard you try, and feeling judged by others for their skinny appearance. But what I didn’t talk about is when it’s more than just picky eating.
Many children with cystinosis have a very small appetite, with most of them getting the bulk of their nutrition through their feeding tubes, usually with something like pediasure or a blended diet. For them it’s more than just an aversion to trying new things it’s actually a medical condition that’s keeping their appetites down.
You know the saying, “they won’t starve themselves,” unfortunately for some that simply isn’t true. Some children with medical conditions will in fact starve themselves because they don’t feel hungry. We worked with an Occupational Therapist (OT) from SHARE Family and Community Services for about a year and a half trying different things to pique her interest in foods. Whether or not I think these sessions helped is up for debate.
Mostly I was looking for a quick fix. Someone to come in, wave their magic appetite stimulating wand and within a matter of weeks I’d have a totally different kid. As you can probably guess, that didn’t happen. The suggestions and techniques that we worked on were all meant to slowly build Elsie’s relationship with food and when you have doctors and dietitians telling you she needs to eat more now, the slow road is also full of frustration, anger and failure. More often than not Dave and I would quickly loose hope after trying something new and revert back to the old way. We’ve since stopped working with an OT because after a year and a half there was nothing else new for us to try.
I did however attend a workshop that SHARE held on how to help picky and problem feeders which had some good tips and I wanted to share the points that I took away from it.
1. Create a routine: They recommended having set times where your children sit down at the table for every meal, including snacks. And eliminating distractions like tv or games. For us this didn’t work, Elsie is a distracted eater, and will mindlessly eat if the tv is on but if it’s off she’ll eat nothing. At the time adding a feeding schedule to our already full medication schedule was just too much for us to take on. We do however try to eat our meals around the same time everyday and always at the table.
Note: They also mentioned if a child has trouble sitting still during meals a pre-meal stretch or exercise routine could be beneficial. It could be something like 10 jumping jacks, or giving them a task, such as setting the table that could help get them into food eating mode.
2. Have Proper Positioning: Children should be properly supported at meals as this will allow them to focus on chewing and eating, rather than keeping themselves upright and stable. They recommended the 90-90-90 position, so that’s sitting upright with their back supported and the angle between their torso and hips at 90 degrees. Then they should have their feet planted firmly either on the floor or a foot rest so that the angle at their knees and ankles are both 90 degrees. Proper positioning also supports the respiratory system and allows better hand-to-mouth coordination.
3. Set a time limit for meals: Meals should not last longer than 30 minutes because at that point they start to burn the calories they’ve just consumed. This one has been really tough for us and for the most part we don’t implement it anymore. Elsie’s a grazer and will literally take 20 minutes to eat one cheese string. It’s painful to watch but we figured that even if she wasn’t gaining anything calorie wise at least she was still physically eating something. I don’t know if this is a good idea but it’s just what we’re comfortable with.
4. Serve your meals family style: They said children were more likely to eat better and more if they had options. So rather than plating the food before bringing it to the table, they recommended just putting it all on the table and letting the child put food on their plate. This gives them control over what and how much they want to eat. Turned out Elsie loved dishing up herself but she wouldn’t stop, she’d just keep piling more on her plate, which she never ate, and then started forcing food on the rest of us. I liked this idea but it just didn’t work for us.
5. Don’t offer rewards: Contrary to what most of us think, apparently bribing children to eat doesn’t work. Offering something like ice cream, only after they eat their veggies, may not motivate a child and actually teaches them that there must be something wrong with veggies. This made a lot of sense to me and I’ve tried not to fall into this but it’s tough. I never realized just how often I did this before, and I know for a fact that it does not motivate Elsie to eat at all.
6. Try to avoid food jagging: A food jag is when a child eats the same thing, the same way, at virtually every meal until they burn out then never eat that food again. Elsie is a classic food jagger and I’m constantly worried about what we’ll feed her after she gets sick of the 5 things she eats everyday. Ideally a child would eat 3 different foods at each meal for 2 days before repeating and anyone who has a child with cystinosis is probably laughing their ass off at this idea. To avoid food jagging they recommended presenting the food in different ways. Even if it’s the same food it could be arranged in a different shape, cooked a different way, or maybe even a different colour by adding food dyes. We tried this for a little bit and then eventually gave up because it was a lot more work on our part.
7. Manage your goals and expectations: This is the most important piece I took away from the whole workshop. As with pretty much everything, in order to have success you need to be clear on your goals. To just say I want my child to eat more food and a larger quantity is way too vague. It needs to be broken down into smaller goals like a) keep a new food on their plate through the whole meal , b) stay at the table the whole time, c) taste one new food this month, etc. You really need to start with baby steps that are simple and easily defined. This way you have a clear plan and path to whatever goal you may have and you won’t get discouraged as easily.
At the workshop they reiterated that implementing the above tips would take time, and improvement may not be seen for months if not years later. But if consistent it would create a routine and set the foundation for a healthy relationship between your child and food. Unfortunately for Dave and I we just didn’t have the patience to be consistent. The thing is though, Elsie is still doing great.
Trying these different things allowed us to learn what did and didn’t work for us and more importantly it allowed me to finally let go of the pain and stress I put myself through over Elsie’s problem feeding. Over time I’ve learned to accept Elsie’s eating habits and work away at the little things that may help set her up for better habits over time. Things like allowing her to choose how much she’ll eat at meals, praising her for eating well, and giving her pediasure when she doesn’t eat enough.
As she’s gotten older we have noticed her eating improve but it’s slow going. Does she get the recommended 1,500 calories per day? No. Does she eat 3 different foods at every meal for 2 days. Hell no. But I’m not worried about it anymore. She’s growing, happy and incredibly healthy right now and that’s what’s really important to me.