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What to eat when you can't eat

The last 3 weeks have been challenging for Miss Raya. She has been off of all food except for Smarties and DumDums. After spending so much time trying to get her to eat, taking food away has felt mean and wrong. When all you can have is Smarties, DumDums, water, and ice, eating gets pretty dull. We don't know how long she will be on an elemental diet and we don't want her to lose ground with her oral motor skills or lose interest in eating, so we've been trying to get creative with what we have to work with. (she is not interested in drinking Neocate, nor are we interested in trying to make her)

There are a few things that we are not doing at all right now:
  • No eating out with the kids. Back when she didn't care about food and back before we knew about her food allergies, she was content to sit at the table and play with crayons, drink water out of a 60ml syringe, and nibble at ice cubes/tortilla chips/fries. Now that she has gotten used to nibbling at food when we're eating and enjoys going out to eat, we feel like taking her to a restaurant would be cruel. At home, she can leave the table if she doesn't want to watch us eat things she can't but she couldn't do that at a restaurant.
  • We don't eat any of Raya's favorite foods. We haven't had pizza in our house since November. I had JUST bought the special fake cheese to try and make her some safe pizza right before she went on the elemental diet again. There are some things that we know she likes that we still eat just because we have to eat SOMETHING, but there are certain foods that make her very sad when other people are eating them and she can't, so those are the ones we're avoiding.
  • We don't bake treats. I've been too busy with school to even think about baking anyway but since I've been on a break, I've thought about making cookies a couple of times. Then I think about how sad Raya will be that everybody else is eating warm, fresh chocolate chip cookies when she can't and I change my mind.
  • We're trying not to remind her that she misses food. The big kids are not {supposed to be} asking her if she's hungry, talking about being hungry in front of her, or asking for snacks in front of her.
Now I realize that some people might disagree with the idea of the rest of us avoiding things she likes just so she doesn't get her feelings hurt. If the no food thing lasts for a long time, then she will need to learn how to deal with the unfairness of not getting to eat things she likes when other people can. However, right now she's 3 years old and is not able to comprehend that so we feel like it's better for us to sacrifice a little right now in order to help her cope. She's getting reacquainted with watching everybody else eat but sometimes it gets to her so those are the things we're doing right now. Mealtimes have been more difficult than snack times. Here's what we're doing to cope with mealtimes:
  • Let her do something else while everybody else eats. When I can convince her that she would rather play games with me on the iPad in the living room, we do that. When you're hungry, the smells of food can trigger a physical response in the digestive tract that would prepare it for digesting food. For someone who is not able to eat, that response causes discomfort. If she doesn't want to be at the table, we don't make her.
  • Take her for a walk. Sometimes it's nice to just get her out of the house and away from the smell of food that she won't get to eat. Sunday evening, Raya and I took advantage of the beautiful weather and went for a 1.5 mile walk around our neighborhood. She got bored part of the way through, but it was better than having her sit at the table and cry and beg for food the whole time like she'd been doing all week. I've also taken her with me to run errands while everybody else eats.
  • Let her color at the table. Lately, she's really enjoyed coloring books so we've started letting her bring a coloring book and crayons to the table just so that we're all at the table together and enjoying each other's company.
  • Let her choose something to eat. Her list of options is really short, but we try to give her as many opportunities to make choices as we can because it helps her to feel like she's got a little bit of control over the situation. Sometimes all she wants to do is eat ice cubes while we eat dinner and for now, that's totally fine.
While we're on the subject of what she can eat, here are a few of the creative things we've tried with her 4 options (Smarties, DumDums, ice, and water) beyond just eating/drinking them as-is. One of the biggest things for her is that being 3, she likes things better if we use the right verbiage. Instead of asking her if she wants a bowl of ice with water, we ask her if she would like a bowl of ice soup. Flowery language can go a long way with a 3 year old.
  • Ice soup: crushed ice in a small bowl with enough water to get the ice wet. This is her current favorite.
  • "Wet ices": 2 wet ice cubes in a cup. Not 3, not 4, just 2.
  • Smartie soup: This was the genius suggestion of my sister. We added thickener to some water and dropped Smarties in. Thickened water is more scoopable than regular water, and the Smarties make it more interesting. The problem was that thickened water is just plain weird and she was a little put off by the flavorless gel in her bowl. (side note, I don't blame people one little tiny bit for not wanting to drink thickened beverages. Thick water is just wrong.) Next time, we'll crush Smarties into the water before thickening it or something.
  • Popsicle soup: This was slightly ridiculous but she loved it. I crushed about a dozen DumDums (2 flavors mixed together), put the crushed candy in a pan with about 1C of water, and melted it down into a syrup. Then I attempted to freeze the syrup in an ice cube tray, which was a fail because the syrup was too sugary to freeze completely. They were partially frozen but not enough to just give her the cubes like I had originally planned. The solution was to put a cube into her small bowl and put a little bit of water in the bowl to dilute the sugar, and ta-da, popsicle soup. This would probably go better if it was thickened also.
Popsicle soup

Things we plan on trying sometime in the near future (maybe):
  • Neocate Splash. Not the tropical flavor though, we've tried that and she thinks it's gross. I've tried it and I think it's gross too. I also plan on making Splash-sicles and/or Splash-sicle soup
  • Neocate Nutra, flavored with DumDum syrup. I will be telling her it's pudding.
  • Revisit DumDum popsicles only dilute the syrup a LOT more so they'll actually freeze solid. Throw them in the Vitamix to make them slushy. She likes slush.
  • Chocolate Neocate made into slush. Since she loves "ice soup," we think she might like slushy Neocate "ice cream."
When we're able to start adding foods back in, we will be able to do a lot more with her "soup" and popsicles. Thank goodness she likes cold things or we wouldn't have anything for her!

Aside from the very few things she can eat (which have absolutely NO nutritive value and are just sugar), there are other things that we encourage so that she doesn't lose her oral motor skills. I've noticed (and so has Raya's respite provider) that Raya's speech is getting lazy again. Words that had been clear and easy to understand are now getting soft and choppy again. I'm not sure if a speech therapist would agree with me, but I feel like it's from the lack of exercise that she had previously been getting by eating. Even the small amount of food she was eating required her to bite, chew, manipulate the food with her tongue, and swallow it. Smarties and ice don't require that same effort and after 3 weeks, she seems to be slipping a little. Here are some of the tools we use to help her retain her oral motor skills:
  • Chewy tubes: Chewy tubes come in a huge variety of shapes, sizes, colors, and even flavors. They can be purchased online from Amazon. Ours were given to Raya by her previous feeding therapist and are made out of heavy rubber tubing used for exercise. I've thought about getting her some of the flavored ones but I'm not sure that she'd really care that much for them.
  • Flavored tongue depressors: These can also be ordered in various colors and flavors from Amazon. There are plastic ones and wooden ones, and I would recommend avoiding the wooden ones. Raya's previous FT brought her a couple of plastic ones with animals on one end that were banana flavored and she seemed to like them. We haven't gotten to the point of using flavored objects yet but if we do, those are the kind I will get her.
  • Wet washcloth: Chewing on a wet washcloth was the catalyst for Raya accepting water in her mouth. I don't remember exactly why or how she got started with chewing on the wet washcloth, but before long she was sucking water out of it. We used it as a feeding therapy tool and would have her bite the corner of it between her molars and play tug-of-war with us to help her get used to biting between her back teeth.
  • Textured toothbrushes for babies: In the baby toothbrush aisle at places like Target and Babies R Us, there are double ended toothbrushes that have different textures at each end. They are awesome for kids who need oral sensory work and also for kids (like Raya) who refuse to let a parent near their mouths with toothbrush in hand. Chewing on a toothbrush is better than nothing!
Textured baby toothbrush and chewy tube


 I know there are other things that we could probably try and things that other people have thought of that we haven't, but these are the things we're doing for now that have helped Raya cope with having to stop eating food. 

Comments

  1. I know you know there are other options out there that you're not trying yet, but I do wonder if she might love shaved ice! We're an EoE family and it's a big hit in our "community." You can make dum dum flavored syrup for it! Good luck:)

    ReplyDelete
  2. Cotton candy is a huge hit here (in fact, the kids at school love when DD's class has a bake sale, because that's what she brings). We use plain white sugar in ours, and everyone just gobbles it up!

    If she likes toothbrushes, how about a vibrating one? DS refuses to let a vibrating toothbrush near him, but he loves his Z-vibe (I think he seems to like bristles OR vibration, but not both at the same time.) I had to get a spare so I had "mine" to do therapy and he could have "his" to gnaw on all the time.

    It's hard -- and three is a rough age for elemental only.

    ReplyDelete
  3. Your in AZ right? Have you ever been to Bahama Bucks? Its like a shaved ice place, but SO good. They also have sugar free options (dont think sugar is an issue though). I have a ton of food allergies and this is pretty much the only outing i can enjoy. Plus, it would make her feel like shes eating with the family, and they have like 100 flavors.

    Sarah

    ReplyDelete

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