Dietary Restrictions and Kids
LifelineLetter, November/December 2015
Before I had children of my own, I used to work professionally with families who had children with severe dietary restrictions. A core part of my job was to teach families strategies and basic skills to help them make sure their child kept on his or her prescribed diet at home, at school, in the community, and at special events. A lot of families struggled to follow these recommendations. It wasn’t until I had my first child that I came to understand how challenging this task is, both logistically and emotionally.
Austin was born at thirty-nine weeks, after a healthy pregnancy. After a week in the neonatal intensive care unit (NICU) he was diagnosed with ultra-long segment Hirschsprung’s disease with 26 cm of small intestine (8 percent of his entire intestine) remaining. I could not nurse him. I could not hold him. I had no idea how to do his medical care. I was in shock.
When Austin was about seven days old, I sat alone in a waiting room as he had his first central line placed. I picked up a parenting magazine and started thumbing through it. It was summer. There were images of children running through sprinklers, articles about sending your child off to sleep away camp, recipes for homemade popsicles and amazing Fourth of July cupcakes. It hit me like a ton of bricks: parenting Austin, with his ostomy, G-tube, central line and parenteral nutrition (PN), was going to be very different than what I had dreamed of when pregnant. It was as if everything I had imaged about being a parent was erased and I had to start from scratch. It was the start of a lot of grieving for me and also the start of some creative problem solving to ensure life was as “normal” as possible despite the medical challenges.
Food Is Everywhere
Parenting a child with short bowel syndrome (SBS) has had a lot of ups and downs. There have been enormous challenges and equally wonderful times too. In the beginning Austin had a very poor appetite and didn’t want to eat. That was really hard; I just wanted him to eat a chicken nugget like every other toddler in America! As he got older, Austin’s appetite grew excessively, as did his desire for all the sweets, fruits, and drinks he wasn’t allowed to have. The dietary restrictions have been tough, really tough. I now better understand why so many parents struggle to enforce dietary restrictions with their kids.
First, food is everywhere. It’s part of our everyday life as well as at the heart of almost every celebration, holiday, and special event. It’s woven into most traditions and celebrations across cultures. Second, it’s difficult to maintain restricted diets for some members of a family when the rest don’t have dietary restrictions. Lastly, food is emotional—it’s how we care, love, celebrate, and socialize. Celebrating a birthday without cake, Halloween without candy, or Thanksgiving without apple pie can seem impossible. My biggest struggle was the emotional heartache that food restrictions created. In trying to figure out how to handle each challenge, I always made “quality of life” for Austin our number one priority, and that has really helped when making decisions.
Austin at his second birthday,
surprised by a treat that fits within his dietary restrictions.
Managing a Restricted Diet
Austin has severe short gut, so he cannot tolerate even small amounts of sugar, sugar substitutes, fruit, or most drinks without dumping, which can cause dehydration and behavioral meltdowns. At nine years old, Austin craves the very drinks and sugary foods that aren’t good for him. In addition to Austin, I also have a six-year-old child and three-year-old twins who don’t have any dietary issues. A well planned and predictable approach for how we handle food at our house is critical to keep stress and anxiety to a minimum.
While every child and family is different and a dietary plan needs to be created with direction from the medical team, here are some of the tips that have worked for us.
- Request instructions from the medical team and develop a plan from there. Is any amount of a restricted food permitted? A physician or dietitian may provide this information. When in doubt, consult the medical team.
- Obtain specific and concrete information from the medical team about what foods are permitted and what foods aren’t, using volumes or nutritional guideline information whenever possible. For example, the team might instruct, “Any food that has less than 6 grams of sugar per serving size is OK,” or “Trace amounts of dairy are OK, but not a full glass of milk.” Request sample food lists or menus of appropriate foods to eat.
- Create a written “food plan” of what foods are allowed; volume guidelines (we follow serving sizes); meal instructions (such as have beverages separate from meals); how many meals and snacks per day and at what times; how to handle special events, etc. Review the plan with the child (if appropriate) and all caregivers, including grandparents, babysitters, and nurses.
- Keep expectations reasonable. Some children aren’t bothered by their dietary restrictions while other children struggle. Their attitudes may change over time. It’s important to set your child up for success and modify the environment whenever possible to help them cope with their restrictions. Pushing too much will create stress for the whole family.
- Be as consistent as possible in ensuring that your child follows the medical recommendations regarding his or her diet. Making exceptions to the plan once can lead your child to expect that the rules will be broken; this can lead to disappointment, anger, frustration, and behavior issues. If the medical team or family makes changes to the dietary plan, review them with your child at a neutral time, not at meal time or a special event. Never reward tantrums or negative behavior by giving in as this will only increase the behavior. If needed, ask a spouse to assist, leave an event or meal, or use other strategies to deal with behavior issues, rather than give in. That said, no one is perfect, so expect you’re going to make an occasional mistake.
- Inquire ahead about what foods will be at an event whenever possible. The unexpected can create stress for everyone.
- Have a plan for when restricted food will be present. For example, if your child can’t have sugar and there is a back-to-school ice cream social, decide if you’ll skip the event, permit a small amount of ice cream (ask the medical team for direction), bring a substitute food that your child can eat, or substitute a non-food item (extra iPad time, stickers, money, etc.). Review the plan with your child prior to the event, so he or she knows what to expect.
Potluck meals can be challenging because you don’t know what dishes will be available or what ingredients are in each dish. Again, a plan is important. You could bring “safe” food from home; plan to select foods with your child (and not accept foods offered by others); or arrive after people have eaten. Well-meaning friends and family may not understand or follow your child’s guidelines, so supervision is important.
- Provide positive reinforcement in the form of praise, encouragement, and rewards when your child follows his or her diet plan.
- Discretely inform people about your child’s food restrictions and request they not offer your child restricted foods. For example, at birthday parties I ask the host to not offer Austin cake or ice cream. Depending on how Austin’s feeling, we may leave before cake is served.
- Develop consistent mealtime habits to decrease mealtime distress and behavior issues at home. You may establish rules in your home such as “we don’t share food,” “you may only have the food you are served,” or “no seconds,” depending on the dietary issues. Consider keeping restricted foods out of sight such as in a bin on top of the fridge or in a locked cabinet if necessary.
- Make mealtime at home about more than just food (and the stresses that may be associated with that). Make it a time when the family comes together and shares about their day. Some families turn off the TV and screens, play relaxing or fun music, or play a game. In our home, we play “truth or fiction.” Each person shares something about their day that actually happened and something that is made up and the rest of the family tries to guess which is which.
- Find a balance between the needs of the child with food restrictions and those of the rest of the family. What works for each family will vary and will change as your child ages. Siblings and family members may initially need to eat restricted foods out of view of the child with the medical condition, with the goal that eventually those foods can be eaten in front of the child. Make a decision about whether or not you will keep restricted foods in your house. Decide when the adults and siblings without food restrictions will have access to food. Austin’s siblings get to have special treats such a cupcake or cookie when they are served at school or when Austin isn’t present. We don’t keep sugar in the house.
A medically ill child can get a lot of extra attention and siblings sometimes make a lot of sacrifices. Try to make special one-on-one time with siblings. We have “date nights” where each child gets to go out alone with a parent for the “date” of their choice, such as breakfast at McDonalds, a movie, or going to the park.
- At restaurants, inform the hostess or waiter ahead of time that you have a child with dietary restrictions and request that they not offer your child things they can’t have. For example, if your child can’t have sugar, ask that the waiter not bring the desert tray to the table. Before going to the restaurant, discuss what foods will be selected so there is a plan in place. This makes the meal more enjoyable for all.
- Follow the stop light idea. Younger children may benefit from having lists of foods broken down into “green foods,” which they can eat all the time or in large volume; “yellow foods,” which are allowed daily, but must be eaten in moderation; and “red foods,” which are restricted.
- Plan an occasional “Red Food” day, if OK with your child’s medical team. Some children can tolerate occasionally having a small amount of a normally restricted food. This must be planned in advance; you must all have very clear expectations of how much of the restricted food will be permitted; and it works best for children that are older and able to understand that it is a special occasion. Review with the medical team any instructions, such as a need for extra hydration.
| Austin, right, enjoying a fun, non-food
related holiday tradition.
- Teach your child to read nutrition labels to help them determine what foods they can eat and to help them take ownership of their diet.
- Accommodate dietary restrictions by experimenting with different foods and getting creative. We make low-sugar popsicles with oral rehydration solution that all my kids enjoy. Since Austin can’t have concentrated sugar, we occasionally have a “sundae” made with whipped cream and ice cream cones or mini graham pies, with a few sprinkles on top. It’s tasty and surprisingly low in sugar. For birthdays, I’ve made “cakes” out of corn bread mix and sugar-free vanilla pudding (see photo page 9). Connect with other families to exchange recipes and ideas.
- Find new, non-food–related traditions for the holidays. At Christmas, we go to a tree farm and take a tractor ride out to cut down our own Christmas tree. We also make bird feeders for the birds, sing carols, and sponsor a needy family.
- Modify food-related holiday traditions. For the first few years, Austin couldn’t tolerate Christmas baking without a major meltdown or trying to sneak food. But now that he’s older, the kids each bake and decorate one big cookie for Santa. It’s a well-established tradition to bake for Santa and Austin is able to participate and enjoy it along with his brothers. We also decorate gingerbread houses but don’t eat any candy. I buy candy Austin has said looks “gross” and that he wouldn’t want to eat.
- Discuss a plan for lunch at school based on your child’s needs. Can your child eat with other students? Do they need to eat in a separate location? (Try to avoid separating from peers if possible.) Can a reliable adult or nurse monitor the child to ensure the diet plan is followed while they sit next to their peers? Some schools have a closely monitored “allergy table” where all children with allergies sit. Find a balance that works for your child while allowing them to have social time with their classmates.
- Educate your child’s teacher and school nurse about your child’s dietary restrictions and, again, come up with a plan. I send notes home to the other parents about Austin’s medical condition and requesting they not, for example, send candy home. Before an event where food may be present, we always come up with a backup plan. For example, the morning of Valentine’s Day I review that if someone forgets Austin can’t have candy and sends him some with his Valentine, we will exchange the candy for a quarter or extra screen time (Austin’s choice). Once your child is school aged, include them, as developmentally appropriate, in planning how to handle these events.
- Acknowledge there may be a sense of loss if your child can’t eat. Beyond the emotional challenges of raising a medically complex child, parents and children may experience grief over the inability to eat; the grief will evolve as your child ages. Not being able to eat certain foods really upsets Austin. Feeling like the “bad guy” or “food police” takes its toll on me, as his mom, emotionally.
Finding support from others dealing with similar challenges may benefit both parents and children. Support can be found through online TPN and short gut groups, specialty medical camps such as the Serious Fun network of camps for medically ill children (many offer family camp, sibling camp, and GI camp), Oley conferences, Childlife, and counseling.
Reviewed by Carol Ireton-Jones, PhD, RD, LD, CNSC, FASPEN, FAND; Laura Matarese, PhD, RDN, LDN, FADA, FASPEN, CNSC; and Marion Winkler, PhD, RD, LDN, CNSC, FASPEN.
Food is everywhere: on the TV, in magazines, and, of course, with the people around you who eat. If you have very specific nutrition needs, meaning that you have a very specific type and number of foods that you can eat, you probably notice this more than others. If you are an adult, you have probably developed some coping skills to deal with this, and may be using them. But what if you are a kiddo? You may want to be like everyone else and eat like them too. But what if that just isn’t good for your system?
Although great strides have been made over the years to liberalize the diet for short bowel syndrome (SBS), each person tolerates foods differently. It can be tough when you are raising a child with SBS. Jennifer Rath has seen both sides of this challenge, first as a child-life counselor, but now as a mom to a child who has a restrictive diet due to SBS. In the article below, Jennifer discusses food from her perspective: mom. She raises many good points to which many people (parents, but also adults with SBS) will be able to relate.
The article highlights the role of the registered dietitian nutritionist (RDN) and health care team in working with nutrition support consumers. These professionals can help assure that nutrient needs are being met—and be creative—while considering the emotional and social benefits of eating. As Jennifer suggests, maybe the oral rehydration solution (ORS) is frozen so everyone gets an icy cold treat. Or an RD can help provide a list of foods that are good for “cheating.” We should all be cognizant of foods we provide at events, from school functions to family get-togethers, to make sure everyone’s needs can be accommodated.
Thanks, Jennifer, for bringing this important topic forward. The suggestions she makes may not fit you, so always remember to bring this back to your individual situation and your clinical team. Do you have questions? Talk to your health care team or send a question to the “Nutrition and You” team by e-mailing or calling the Oley Foundation (Lisa at firstname.lastname@example.org or 518-262-5079).