Nutrition tips for children with mito

Introduction to Mitochondrial Disease.

• Ashley Mitchell, a specialist pediatric dietitian, has worked with children with genetic conditions, including Mito, since 2011, and recently opened a private practice in nutrition and health.
• Mito is a condition where the mitochondria, the energy powerhouse of the cell, cannot efficiently turn carbohydrate foods into energy, causing cells to malfunction and potentially disrupting any bodily organ.
• There are many types of Mito, and it can present at any age with varying symptoms, making it challenging to determine the best treatment or nutrition for each child.
• Treatment goals for Mito typically focus on symptom management and providing supportive care, with individualized nutrition tips for each child.

Nutritional Assessment and Management in Mito

• Nutrition plays a crucial role in managing chronic conditions, particularly in children, as poor nutritional status can lead to increased fatigue, reduced participation in therapy and exercise, and more frequent infections.
• A nutrition assessment for a child with Mito involves evaluating vitamins, minerals, protein, energy, fat, and fluid intake, as well as growth, and considering factors such as medical background, feeding history, and environmental influences on eating.
• A multi-disciplinary team, including occupational therapists, physiotherapists, and speech therapists, may be involved in supporting a child’s eating, nutrition, and feeding needs.
• Common goals for nutrition tips in Mito include improving growth and weight gain, which are assessed through growth and physical assessments tailored to each child’s needs.
• To assess a child’s nutrition status and growth, measurements such as weight, height, and segmental lengths are taken, and plotted on a growth chart over time to track progress and identify areas for improvement.
• Goals are set to improve nutrition and growth, which may include increasing energy intake, and ensuring weight and length are in proportion to each other.
• Some children may require added protein and energy to assist with weight gain and growth, and strategies such as adding high-energy additions to food can be used to achieve this.
• The phrase “making every bite count” is used to describe the approach of optimizing the energy content of food without asking the child to eat more, for example by adding grated cheese and margarine to scrambled eggs.

Strategies to Improve Energy Intake

• Using full-fat dairy products, adding sauces or gravies, and serving lower-energy foods with high-energy additions such as yogurt or oil can also help boost energy intake.
• Establishing a regular eating pattern, including two to three snacks a day, can help ensure the child is getting enough energy and nutrients.
• Choosing foods that are easy to eat and require less chewing can be helpful for children with feeding, chewing, and swallowing difficulties, or those who need to eat quickly.
• Avoiding lots of fluid at meal times can help prevent filling the child up and reducing their appetite for more nutritious foods.
• Brainstorming strategies for eating out or on-the-go, such as taking ready-to-eat high-energy snacks, can help ensure the child is getting enough energy and nutrients when away from home.

Addressing Gastrointestinal Issues

• Oral nutrition supplements or tube feeds may be considered in some cases to help top up the child’s nutrient intake.
• Children with mitochondrial disease often experience gastrointestinal discomfort, including constipation, which can lead to decreased appetite, difficulty tolerating tube feeds, and increased risk of reflux.
• Constipation is defined as having two or more of the following symptoms for a month or more: fewer than two stools per week, withholding or incomplete evacuation, painful or hard bowel movements, large diameter stools, presence of a large fecal mass in the rectum, and soiling issues in toilet-trained children.
• A thorough assessment is necessary to determine if constipation is a factor, including questions about bowel movements and stool consistency, with a normal bowel movement considered to be a type three or four constipation can still occur even if a child has runny stools, as it may be a sign of a blockage.
• Treatment strategies for constipation may include behavioural changes, such as establishing a regular toilet routine, using toilet seats, and teaching children to listen to their body’s cues, with support from an occupational therapist if needed.
• Dietary modification alone is often not enough to treat constipation, and adding extra fibre or fluid may not fix the issue and can sometimes make it worse.
• Laxatives, such as osmotic or lubricant laxatives, may be used to treat constipation but should be chosen carefully to avoid creating dependence.
• Osmotic laxatives, such as osmolax or movicol, can be used safely long-term and work by drawing water into the bowel to help the stool pass-through.
• Treatment with laxatives should not be stopped too soon, as the bowel takes time to return to its usual shape after constipation, and stopping treatment too soon can lead to a recurrence of the problem.
• Managing constipation in children with mito often involves a regular dose of laxatives long-term to allow bowel health to recover, and adjusting the dose as needed to prevent too-frequent bowel movements.

Managing Reflux

• Reflux can be a concern, causing nausea, reduced appetite, and pain associated with feeding and swallowing, leading to a negative relationship with food and affecting energy and nutrient intake.
• Dietary management of reflux includes strategies like small, frequent meals, separating liquids from food, and positioning, such as remaining upright for 30 minutes after feeds.
• Avoiding triggers like caffeine, chilli, and fatty foods can also help manage reflux, and adjusting the rate or volume of tube feeds may be necessary for some children.
• Treating constipation is important for supporting reflux management, and medication may be necessary, guided by a pediatrician.

Supporting Swallowing and Nutrition

• Ensuring food is appropriate for swallowing or feeding skills is crucial, and signs of aspiration, such as coughing or choking when eating, may require referral to a pediatric speech pathologist.
• A pediatric speech pathologist can provide guidance on safe textures and consistencies of foods, and dietitians can optimize nutrition to meet these guidelines.
• Modifying food texture or using thickened fluids may be necessary to support swallow safety, and optimizing nutrition can help reduce fatigue and support energy levels.

Maintaining Energy Levels and Micronutrient Adequacy

• Maintaining a regular energy supply through three meals and three snacks, avoiding skipping meals and snacks, and ensuring a balance of protein, fat, and energy can help support energy levels.
• In some situations, looking at the types of carbohydrates consumed, such as avoiding refined carbohydrates, can help prevent spikes in blood sugar levels.
• Adjusting carbohydrates to lower glycemic index (GI) can help achieve a more sustained energy release, which can be achieved by consuming whole grain breads and pastas instead of refined options.
• Timing of food around exercise or daily living is crucial to ensure the child has enough fuel for their activities.
• Ensuring micronutrient adequacy is essential, and common micronutrients that may be low in children include iron, calcium, and vitamin D.
• Iron-rich foods, such as meat and chicken, can be challenging for children to chew, so adjusting textures or introducing fortified breakfast cereals and breads may be necessary.
• Calcium and vitamin D are crucial for bone health, and non-weight bearing children may require additional support to prevent fractures.
• Sunlight is essential for vitamin D production, and it can be challenging to obtain sufficient amounts from food sources alone.

Monitoring and Improving Nutrition

• A food diary can be used to assess a child’s nutrition balance and identify potential areas for improvement.
• Analyzing a child’s food intake can help determine if additional supplements are necessary to support their nutrition.

Creating a Supportive Mealtime Environment

• Creating a supportive mealtime environment is essential, and common factors that impact eating include stress, prompting, and encouragement.
• A supportive mealtime environment can help break the “worry cycle” and promote healthy eating habits.
• A triangle for families is described, with the base being the family table or meal time, and the ideal environment is for the child to lean into the meal and the parent or caregiver to also lean in, creating a positive feeding relationship.
• Children may lean out from meals due to various reasons such as developmental issues, reflux, pain, or independence, and caregivers should respond by leaning in and encouraging the child to come back to the meal table.
• Strategies to support a positive feeding relationship include optimizing socialization at eating, making feeding pleasurable for both parent and child, and considering the role of parent and caregiver at the table.
• The division of responsibility explains the roles of parent and child at the table, with the parent being in charge of what foods are offered and when, while considering the child’s preferences and needs.
• The parent should decide when food will be offered, allowing time for the child to develop an appetite, and the child’s role is to decide how much to eat and have as many servings as they like.
• It’s essential to create a supportive meal time environment where the child feels comfortable around food, even if they’re not eating it yet, and any positive interaction with food is a step towards eating.
• A non-linear approach to learning to eat is described, with children jumping between different phases, and any positive exposure to food is a step towards eating, even if it’s just touching or smelling.
• Caregivers should avoid coercing the child to eat and instead focus on creating a positive meal time environment, using supportive language, and avoiding comments on what or how much the child has eaten.
• Examples of supportive language at meal times include saying “you don’t have to eat it, that’s okay” and avoiding comments on the child’s eating, allowing them to progress at their own pace.
• Children may not immediately like new foods, and it’s essential to hold space for them to learn and develop a taste for it, avoiding pressure, bribes, or rewards that can result in less intake of the food in the long term.
• Instead of asking if they liked a new food, it’s better to ask open-ended questions like “what did you think” to encourage conversation and avoid pressure.
• If a child makes a face or scrunches up while trying a new food, reassurance that it’s okay and it takes time to get used to it can be helpful.
• Limiting conversations and pressure around food, and instead talking about other related topics, can also be beneficial.
• Praise, even though it comes from a good place, can sometimes feel like pressure and slow down the process of trying new foods, so it’s essential to move the spotlight away from the child’s meal times.
• Research shows that when children are pressured to eat more, they often end up eating less, and pushing them to eat specific fruits and vegetables can result in them eating less of those foods.
• Offering a variety of foods, including preferred and unfamiliar ones, and eating together in a calm and positive environment can help.
• Mixing up the mealtime environment, such as having picnics or eating in the backyard, can also be supportive and improve eating.
• Modeling healthy eating habits by eating a wide variety of foods yourself can set a good example for your child.
• For children with tube feeding, encouraging the social side of eating and demedicalizing the process can be valuable, and setting guidelines around this from the beginning can be helpful.