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What to do when your child can't eat

I've been asked many times in the past several months how we handled the whole unpleasant task of taking all food away from a child who is used to eating. There are a lot of reasons why a child who is used to eating at least some food could suddenly need to stop eating and drinking. Kids who are diagnosed with eosinophilic disorders often need to go on an elemental diet, meaning no food or drinks other than an elemental formula. Elemental formulas do not have any whole or partial food proteins in them. The proteins have been broken down into free amino acids, which makes it nearly impossible for the immune system to recognize the formula as something it should react to. Many kids on elemental diets because of eosinophilic disorders are able to eat Dum Dums, as they are manufactured in a way that prevents cross contamination with allergens, and most flavors don't contain any natural ingredients. Eosinophilic disorders aren't the only immune system-related reason to stop eating. For us, it was multiple confirmed food allergies and the suspicion that there may have been more that we didn't know about. Other kids have to stop taking in anything orally because of the risk of aspirating food or liquids into the lungs. Obviously this can have serious consequences, and often, it's not worth the risk.

So what do you do when your child who is used to having at least SOME food and liquids suddenly can only have formula that really doesn't taste good? Depending on the age of the child and the reason for taking oral eating/drinking away, some things that I will suggest may have to be adapted or just plain won't apply, but here are a few things that might help.

1. Take the focus off of mealtime for a while.
At our house, the adjustment phase took about 6 weeks. When I say "adjustment phase" I'm talking about the time it took for Raya to no longer cry every time somebody else was eating something or throw fits every time she asked for a specific food and was told no, or insist on sitting at the table with us and crying all the way through dinner while begging for food that she had never had any previous interest in. It was a pretty rough 6 weeks. We felt like gathering everybody together at the table was basically just teasing her. We tried taking turns sitting in another room with her and letting her play special games on the iPad or watch movies, but she knew that everybody else was in the kitchen eating and she wanted to be there too. For some kids, going to a different room might work but for us, it didn't. Making mealtimes a very casual thing helped. I didn't spend very much time cooking during those first few weeks and the kids ate a lot of burritos. We didn't all eat at the same time either. The weather is pretty nice in February where we live, so sometimes that meant that the kids took their food outside and ate. I usually waited until the kids were in bed before I ate dinner because if I tried to eat while Raya was awake, she cried and whined and climbed all over me. During the day, I ate when she was distracted or in another room. I may or may not have had to hide in the bathroom or my closet on more than one occasion to wolf down a PB&J...

Some people may criticize this approach with the argument that the child will have to learn to deal with other people eating, but I don't have any doubt that eating in front of her during the time when she was having the hardest time emotionally would have been cruel and would not have helped her adjust. This is not to say that I made EVERYONE hide their food from her, but when it bothered her that someone in the family was eating, we quietly removed her from their presence or had them take their food elsewhere. We also missed out on a couple of events that revolved around food that would have been very difficult for her to handle (and in turn, difficult for ME to handle).

For older kids, make family time something that doesn't involve food. Play games together, go for a walk, play at a park, or even just watch a movie together. Taking the focus off of mealtime doesn't mean giving up family time, it just means redefining it.

2. Find something else to do during mealtime.
I know I said that this technique didn't really help us much, but for some kids it makes a world of difference to know that when everybody else is enjoying food, they get to do something else that they don't normally get to do. A couple times when Raya was having a really bad day, rather than have her sit at the table and cry like she often insisted on doing, I put her in the stroller and took her for a long walk while everyone else ate dinner. She loves being outside and the weather was beautiful, so she was happy. For other kids, going to another room and having one-on-one time with different family members can be a fun distraction from missing out on dinner. Take turns being the one that plays with the child who isn't able to eat. Go for a bike ride, play board games, card games, video games, toy cars, Barbies, or just snuggle and watch a movie.

3. Find things they CAN have and offer as many choices as possible.
For kids who are unable to eat because of aspiration or choking risk, this part will probably not apply, but for kids who have other reasons (like food allergies) to stop eating/drinking, this is what we were able to do. Her GI and I had discussed the fact that since she was going elemental because of food allergies, it would be okay for her to have Dum Dums (suckers) and Smarties since both of them are manufactured in facilities that are free of the top 8 most common food allergens. We wanted her to have SOMETHING she could eat.


She was also fortunate that since she had passed her last swallow study on all thicknesses of liquids, she was still able to have ice and water. She LOVES ice, so we let her eat ice during meals when she wanted to be at the table with us. If she had not passed her swallow study on ultra thin liquids, we could have thickened water and then frozen it into ice cubes so that she could have safely eaten the ice cubes. (even though ice is a solid, it melts into a very thin liquid so it would still be off limits for a child that did not pass a swallow study) We offered her as many choices as we could with the limited number of things she could have. You wouldn't believe how many different ways there are to serve ice to a 3 year old. Crushed, cubed, wet, dry, in a bowl with water, in a bowl without water, on a plate, in a cup, with a spoon, with a "spork", ice soup, slushy ice, etc. We let her choose what dish she had her ice in and what kind she wanted. Even that little detail made a huge difference to her. After she had gotten to a point of being okay with the rest of us eating food, we went out to dinner and would order her a cup of ice and a plate. It was priceless to see how excited she got when the waitress would bring out a big cup full of ice and set it in front of her because it was exactly what she had asked for.

Aside from the ice, we learned that there's more to Smarties and Dum Dums than meets the eye. Did you know that you can melt down Dum Dums into a simple syrup and use it to flavor popsicles? Raya was pretty excited about that one. We also were able to use thickener to make Dum Dum syrup into "soup". If she wanted to add Smarties to it, we added Smarties to it. The thickener was at the suggestion of my clever sister, who is a nurse. (Some thickeners may not be appropriate for kids with eosinophilic disorders.) Here are a few different types of thickeners:

We use packets of Simply Thick (honey consistency) mixed a little thicker than the directions say so that it's scoopable. After my sister suggested thickening water into "soup," I took the idea and ran with it. First, we tried making "Smartie soup" by thickening water and putting Smarties in it but she didn't like that. I couldn't blame her. Thickened water is just plain weird. Since Neocate comes in vanilla and chocolate, we used thickener to make her flavored formula into pudding. It was AWESOME. We had one more thing we could give her, she was thrilled to have something else to eat, and this actually had some nutritive value to it. When she wanted a special treat on Easter while we were eating our dessert, I let her choose a color of food coloring and dyed her pudding blue. She was SO excited! We also made popsicles out of her thickened Neocate. Then we were able to branch out to EO28 Splash because it's also an elemental product. That gave her 3 flavors of "juice boxes" to choose from, and we made popsicles out of those too. Get creative with what you do have available!

4. For kids who are not able or allowed to swallow, find non-food items to work with.
Feeding therapy with no food was kind of funny. We didn't want to lose our spot at the clinic we love, so we kept going and just worked on oral motor skills, drinking water without choking on it, and speech (since our feeding therapist is technically a speech therapist.) Feeding therapy doesn't always have to involve food in order to be productive. You'd be amazed by how many flavored non-food items you can find for kids. Some have to be ordered through certain websites (like www.chewytubes.com) but there are a lot of things available on Amazon. Having something flavored to chew on, suck on, lick, etc. can help with cravings for something with flavor if things like Dum Dums are not an option. Here are a few examples.

Flavored Chewy Tubes:


Unflavored Chewy Tubes:
Some kids may not necessarily care about having something flavored but may just enjoy the sensory input of having something to chew on. It's also important to keep working on oral motor skills, so chewy tubes (flavored or not) are a great tool to have. They come in a wide variety of shapes, colors, and textures. Here are a few:


Flavored Tongue Depressors:
These were something that we first saw several months before Raya went elemental. Her feeding therapist brought one with her and Raya loved it. These would give a child who isn't able to eat an opportunity to have exposure to new flavors. The great thing is that you can get regular old wooden tongue depressors or more durable plastic ones with cute little animal faces printed at one end.


Oral Care Toothettes and Glycerin Swabs:
Toothettes are a nice option for a child that doesn't like hard or chewy things like the chewy tubes and tongue depressors. They also come in flavored and unflavored, as well as with or without an oral cleansing solution. Glycerin swabs help moisturize a dry mouth, which can be a problem for children who are unable to eat or drink, and come in a lemon flavor.

Other chewables:
One thing that Raya really liked chewing on was a damp washcloth. It sounds gross and yeah, it was pretty gross when she'd drop it on the floor and then stick it back in her mouth before I could stop her, but it was a really good thing for her. For a child that has safety issues with swallowing liquids, caution would have to be taken to make sure that there was no risk of aspirating liquid from the washcloth.

5. Blame the doctor but do it in the nicest way possible.
I'm only halfway being funny about that. I definitely don't mean throw the doctor under the bus, but don't be afraid to let the child know that their new dietary restrictions aren't something you're imposing on them just for the heck of it. For kids who are old enough to understand even a little bit that eating or drinking will make them sick, it's important to talk about it. Explain on whatever level they are able to understand the reasons why they are no longer allowed to eat or drink. Remind them how they felt the last time food or liquids made them sick. Sometimes it means dragging the doctor into it or even having the doctor explain to the child what their new dietary restrictions will be and why, and if possible, a time frame on how long it will be before they can try eating or drinking something again. I feel like it's really important in the long run for kids to be included in those conversations as much as possible. Yes, they are difficult conversations to have and the instinct as the parent is to protect the child from them, but some of these kids will be dealing with life long medical conditions and the sooner they become a part of their own medical team, the more equipped they will be as they get older to help manage their own care. (my opinion, of course...)

In our case, Raya had recently turned 3 years old at the time and had gotten to a point where she looked forward to seeing her GI doctor, even if she did still have some anxiety when the doctor walked in the room. The best we could do in explaining it to Raya was to tell her that Dr. S said she needed to stop eating food for a while because lots of different foods were making her tummy sick. She was able to understand already that sometimes we had to do things that Dr. S said whether she liked it or not, so that explanation made sense to her. I have always talked very positively to her about her doctor and made frequent comments about how much her doctor cares about her and wants her to feel good, so she trusts her (as much as a 3 year old can trust a doctor, I suppose). That is not to say that she was HAPPY about the restrictions we were imposing on her, but being able to say, "I'm sorry that we can't let you eat that but Dr. S doesn't want you eat it right now" did help because then it wasn't just mean Mommy saying no. At first, there was still a lot of crying and I said a lot of, "I'm sorry, sweetheart, I know you're sad but if I let you eat that, it will make your tummy sick." After 3 or 4 months of not eating anything but the aforementioned ice, Smarties and Dum Dums, she got to the point where she would say things like, "When Dr. S says I can eat grapes, can I eat grapes?"

6. Enlist the help of siblings
I can only speak for my own family, but having to take food away from Raya after 3+ years of trying to get her to eat was hard on everybody. It wasn't easy for the other kids to temporarily give up our peaceful family dinnertimes or feel like they had to sneak food from their sister, or listen to her cry about food all the time. They got jealous of the fact that she got to have Smarties and Dum Dums when they were eating boring old food. Even Raya's preschool teacher commented a few times about the other kids being jealous that she was eating Smarties and they were stuck with goldfish crackers. That was frustrating for me because I really didn't feel bad that my child was eating Smarties when her other option was to sit and eat nothing while watching all her friends eat a snack. I wish I had a dime for every time I had to say (to my own kids or to other people), "Well, if she had a choice right now she'd probably rather have the goldfish crackers!" Or whatever the food of the moment was. I had several talks with our other kids about being supportive of Raya and what they could do to help her not be so sad about not getting to have food. Sometimes when Raya would start to get upset about not getting whatever somebody else was eating, one of them would say, "Wow, Raya, you're so lucky you get to have chocolate pudding for dinner!" (pudding made out of Neocate + thickener) A little bit of sibling rivalry goes a long way. Knowing that somebody else thought SHE was lucky for having whatever she was having helped perk her back up.

I saw a story on NBC a year or two ago about a teenage girl who was suddenly struck with gastroparesis (paralysis of the stomach) after an illness and couldn't eat anything. She talked about how it was sometimes physically painful for her to smell the scents of cooking food because of the physiological reactions that are triggered (i.e. salivation, release of stomach acid, etc.) to prepare the body for digestion. Because of how difficult it was for her physically, mentally, and emotionally, her family decided that they would close their kitchen and not cook at home anymore for as long as she was unable to eat. That story really struck me for many reasons, one of the biggest being what a sweet sacrifice her family made in order to support her in her illness. I have remembered that example and tried to keep it in mind as we've gone through different phases with food.

By contrast, I know of a few adults and teens who are unable to eat for various reasons, and cooking for other people makes them feel good. It makes them feel like they are still an important part of their family and are providing a helpful service for other people. My sweet friend Rachel LOVES to cook but is unable to eat most foods due to her disease. She and a couple other friends and I all went up to the hospital to visit friends whose baby was in the hospital one Sunday afternoon, and Rachel volunteered to make us all dinner. She made the BEST steak quesadillas and then nibbled on some plain potatoes while we ate her delicious creations. It felt a little awkward to eat in front of her but she reassured us that cooking made her happy and she was just happy to be able to eat her potatoes and not get sick. I learned a valuable lesson from her that day about not assuming that it must be hard for people who can't eat to watch other people eat. While that is probably true in many cases, some people are happy to not feel sick and if not eating is what it takes to not feel sick, then so be it. Older children may still want to be involved in meal preparation and family dinners even if there's nothing on the table that they can eat. It's important to be attentive to your child's feelings and follow their lead as to how they want to be included in meals.

It's difficult to know how much things like the smells of cooking food or the sounds of food packaging rustling may or may not bother a child who is too young to express their feelings about not being able to eat, and I think sometimes it's easy to overlook the need to make accommodations for them. We don't want to spoil our children by catering to their every emotional whim, but I personally feel that in situations like having to take away food and liquids by mouth, those lines are blurred and you have to do what feels right for your child regardless of what society tells you. Society in general doesn't have a clue what it's like to have to take all food away from a child. It's just unfathomable for most people. You do what you and your family need in order to get through a difficult adjustment. Things won't always be the way they are right at the beginning, and changes can be made as you go along. In the end, all you can do is do your best, and hopefully these suggestions will be helpful.

Comments

  1. "We don't want to spoil our children by catering to their every emotional whim, but I personally feel that in situations like having to take away food and liquids by mouth, those lines are blurred and you have to do what feels right for your child regardless of what society tells you."
    This. Society (well meaning friends, family, therapists) tells us we need to be more firm with our son. If he were a typically eating kid, it would be much easier to be firm with meal times and table rules (such as tv or toys). You should have heard the reaction from one SLP when I told her we put him in front of the tv for meals because he ate more that way. I've gotten dirty looks for letting him use the tablet in restaurants. But I feel that we are doing what he needs.

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