A leading dietician offers advice for managing specialized diets and supporting nutrition from birth through adulthood. 

By Gina DeMillo Wagner

No one understands the expression “food is life” better than rare disease families. For many patients, medical nutrition and restrictive diets are essential parts of treatment. This is true for organic acidemias, intestinal transport and enzyme disorders, urea-cycle disorders, and other metabolic conditions. In many cases, a specialized diet not only prevents serious disability, but it allows children to grow and thrive.

Yet when it comes to putting a special diet into practice every single day, things can get tricky and frustrating. That’s where professionals can really help.

Danielle Starin, MS, RD, LD, is a metabolic dietician at Children’s National Hospital in Washington, DC. She sees patients with all sorts of rare diseases, including organic acidemias and PKU. Along with her colleagues,  Starin treats young patients (infants through young adults) who require special diets, and she coaches parents on how to best navigate the process of feeding and food culture.   

We recently sat down with Starin and asked her advice for navigating the food landscape for rare disease. Here, she offers expert tips for every age and stage of life:

All Ages: Be Creative

Food isn’t just about nutrition—it’s cultural. Families have traditions around food and recipes that may have been passed down through generations. With that in mind, it’s helpful to think of dietary guidelines creatively. “Food as community and culture is a big opportunity,” Starin notes. 

“If every year, your grandmother cooks an amazing brisket for the holidays… and your child can’t have that food, then it’s a much bigger shock to the system,” Starin explains. “One of the joys of my job is taking those beloved family recipes or cultural expectations around food and working with families to find what fits.”

Remember that your dietician is there to help you. They can look at recipes, modify them, and help you find creative solutions.

Infants: Focus on Resilience

When you have an infant diagnosed with a rare disease, the primary goal is getting the baby to eat and grow. “Fortunately, we can be very calculated about what we're feeding babies,” she notes. “If they have a tube, we know exactly what's going through that G-tube. And if they're eating by mouth—or sometimes it's through a bottle—it's pretty easy.”

When your baby is ready for solid food, parental anxiety might increase. “Anyone who has fed an infant knows that they smear their food. They like something one day and don’t like it the next,” Starin explains.

To get through the tough times, she recommends that parents focus on resiliency versus consistency. There will be days that your child will not follow their diet perfectly. “I recommend maintaining a neutral tone around food,” she says. “Acknowledge when things don’t go as planned, use it as a learning opportunity, and try again.”

School Age: Communication is Key

As kids enter school, nutrition becomes more complicated. So, Starin recommends having conversations with your kids early on about their dietary needs.

“The way to be successful at this is to be very matter of fact,” she notes. Think about the conversations we have around food allergies: “You don't really tiptoe around the fact that you’re allergic to peanuts… Same goes here. If you have a special diet, you can eat this, but you cannot eat this.” Try to take the emotion out of it, she adds. If you begin to feel overwhelmed or emotional, step away, take a break, and lean on other adults for support.

Keep in mind that public schools are required by law to provide a lunch that is appropriate to their diet. “If they are on a modified protein diet, for example, that does not mean the school can just feed your child salad and apple juice,” she notes. “That’s not a balanced meal.” In many cases, your child’s dietician or medical team can provide a letter or guidance to the school.

If the school has celebrations that involve food treats, ask administrators if you can send alternatives for your child. Often, the health office has a refrigerator to store medications and special food items.

Tweens: The Only Constant is Change

Many kids around age 10 begin to rebel against their disease and restrictions, Starin warns. “I can almost set my watch to it. They rebel against their medication. They rebel against their diet. They might pour their formula down the drain,” she says.

Through those difficult times, it’s important to have open conversations with your child about the importance of their diet. Help them to understand what it really means for their condition. If there’s a developmental delay that prevents those conversations, then you may have to remove certain foods from your house and reduce the opportunities to rebel.  

Many kids this age benefit from getting involved in the kitchen with food preparation and cooking special meals. Empower them to take ownership of their disease and their dietary needs.

When puberty begins, remember that with the changing hormones often comes increased appetite. That is when it's going to be important to work with your dietician to make adjustments.

Teenagers and Young Adults: Embracing Independence

Teenagers crave more independence and flexibility, and this applies to nutrition too. “I don't like to use the word ‘cheat.’ I like to say flex,” Starin says. “When possible, I like to let them flex here.” For example, if there’s something that your teen is really looking forward to, such as going out to eat with friends, work with them to find ways that they can participate. Their dietician can help them look at menus and find alternatives. “If you’re always very rigid, teens are going to rebel against that,” she explains. “Learning how to give and take and going off diet safely is really important.”

If your kid is going to college, parents should also begin to teach them how to order their own food, medications, formula, and groceries. “Teach them how to make their own doctor’s appointments and how to contact their dietician,” she recommends.

College can be a tricky time, she adds. “Patients tend to go off diet, go off medications, experiment with drinking or drugs. It’s a big challenge if they have a condition that affects metabolism. The first consequence you might notice is that they’re struggling with their schoolwork.”

When metabolic conditions aren’t well controlled, the patient can appear intoxicated even if they’re sober. Starin says she’s seen patients who were taken to jail when they needed to go to a hospital. “I really recommend wearing a medical alert bracelet and also having emergency contacts in their phone set up, and even keeping a card in their wallet.”

All Ages: Food is Just Food

It’s often helpful for parents to rethink their own attitudes toward diet in order to give their children a better relationship with food. We’ve all been subjected to cultural conditioning that says that some foods are “bad” and others are “good.” But food is just food, Starin explains. “Let’s not assign moral value to certain foods. It’s not a bad thing to want to eat cake.”

Similarly, Starin discourages families from turning food calculations into a homework assignment. “If you have to think about measuring and counting every single piece of food, that is so stressful, and it makes it hard to lead a normal life.”

Instead, consider a more holistic, intuitive feeding approach, which includes not forcing bites or insisting on a clean plate. Children shouldn’t have to earn dessert or receive food as a reward, Starin says. The goal is to keep food neutral and talk honestly about how the body uses different foods.

Remember that you’re not alone. “If something’s not working, don’t wait six months until your next appointment,” Starin says. “Reach out. Use the patient portal or email us. Dealing with a chronic condition is hard enough. Let us help you.”

To learn more:

If your medical team doesn’t include a metabolic dietician, ask your doctors for a referral. Or visit Genetic Metabolic Dieticians International at GMDI.org to find a clinic or dietician near you.