Your child’s primary physician will monitor weight and length. A dietician can review nutrition. An occupational therapist and speech therapist have training in sensory and motor issues of the mouth for assessing feeding skills. A speech therapist and radiologist can assess for aspiration. An endocrinologist can assess problems that alter growth. A gastroenterologist and/or complex care and palliative care clinicians can help guide the decisions regarding feeding tubes.
Weight and Height
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Growth, including weight gain and height, is an indicator of health. Standard growth charts are used to determine and adjust the recommended calories being given, but these growth charts were not developed for children with SNI. Some children with SNI have a slower metabolism or are less physically active than neuro-typical children, and thus their caloric needs are less. Others experience periods characterized by a lot of movement and require more calories to maintain proper growth. Establishing a healthy diet early in your child’s life will help you and the medical team make changes as they grow.
Nutrition refers to the fuel the body requires to function optimally and maintain good health. Nutrients include proteins, carbohydrates, fats, vitamins, minerals and water. Diet refers to the food and drinks we eat to gain nutrients and is measured in calories. Calories measure the energy we get from consuming food or drink and energy we use throughout our day. The process and rate at which our bodies convert food and drink into energy is called metabolism.
Body mass index (BMI) compares a person’s weight to their length (height) and is used as an indicator of being underweight or overweight. Traditional age-based growth charts were developed from children without medical problems. While they may provide guidance for how a child is growing, these charts often show that many children with SNI are small for their age, with weight and length often below the lowest line on these charts. It can be more useful to compare a child’s own weight to their own length over time, to determine if their weight is optimal for their growth. Children with limited mobility and/or a lower body temperature tend to have a slower metabolism. They often also may store non-muscle weight in their belly, so examining an undressed child can help determine BMI.
Some children with SNI may not grow to typical height. Nutrition naturally influences height, but height can also be impacted by the endocrine system and the release of hormones.
A dietician can assess for adjustments in the amount of calories needed to maintain optimal weight and encourage growth. Problems that may arise due to too little or too much weight include:
- Skin breakdown, if there is not a fatty layer to protect bones and prevent rubbing
- Sleep apnea, which may be worsened by excess weight
If your child can’t take in enough food or safely swallow, the medical team may suggest a feeding tube. Nutrients go into the stomach through a small flexible tube. Some children with SNI will be exclusively fed by feeding tube. Others will continue some oral diet for taste and pleasure. A speech therapist and radiologist will assess what foods can be safely swallowed. Your child’s medical team will help determine which tube makes best sense for your child. The choices may change over time.
Dieticians and medical clinicians have a difficult task in making decisions about growth in children with SNI. It can be challenging to get the right balance. You have an important role in these decisions. You know when your child is comfortable or uncomfortable. And you will likely know if your child is getting too heavy.
There is a difference between nutrition for health, which is found in protein, vitamins and minerals, and the calories needed for growth. It is natural to give more calories out of worry that your child is not getting enough. You may feel more confident if you work with the nutritionist and your child’s primary care physician to determine the balance of these essential nutrients. Then, if you are worried about your child’s weight, you can ask about adjusting your child’s calorie intake.
As your child’s body increases in weight and height and if they require physical assistance to move from one place to another, you may become concerned about your ability to transfer them. Share this concern with your child’s medical team so they can help you look for solutions. Though the reason for your worry cannot be changed, there are ways to make the day-to-day comfort logistics for you and your child more manageable.