Written by Kristen Weddle, Registered Dietitian and Nutritionist, Mecklenburg County CDSA
There are a variety of services available within Part-C of the Individuals with Disabilities Education Act (IDEA), including occupational therapy, speech-language therapy, physical therapy, and family counseling, just to name a few. Nutrition services is also a Part C service. When looking at all areas of development, nutrition can affect each area. If an infant or toddler is not getting the proper nutrients, it can affect energy level, alertness, awake times, general disposition (increased fussiness), and their ability to learn and move around. The reasons why an infant or toddler may not be able to take proper nutrition can be developmental, mechanical, or secondary to other health problems. Teaming with a dietitian/nutritionist can enhance the information we provide to families.
A pediatric dietitian/nutritionist specializes in providing nutrition care for children with specific needs. They develop nutritional guidelines for children based on their medical condition, and they may help with creating meal plans or nutrition regimens, as well as making recommendations for meeting a child’s needs for specific nutrients. They work with the parents and other caregivers to ensure the child is getting proper nutrition, gaining weight, and growing as expected. A pediatric dietitian teaches families about sound nutritional principles and the best ways to select and prepare food. In some cases, such as with feeding difficulties, delays, severe allergies, gastrointestinal disorders, and low weight gain or failure to thrive, children may require an enteral feeding tube inserted directly into the gastrointestinal (GI) tract for the delivery of liquid nutrients and/or medications to ensure their nutritional needs are met. Often, a dietitian will work with a family and the child’s medical providers to determine the best type of formula to use and discuss how much formula a child will need to gain weight as expected. A gastrostomy feeding tube (g-tube) is either a tube or a button (skin level device) that is surgically placed into the stomach through the abdominal wall.
Depending on the child’s condition, diet modification may be complicated and require a great deal of guidance. Some infants, toddlers, and children may require a continuous tube feeding, and formula is delivered over an extended time period of time by a pump at a slow rate. An example would be 30 ml (or cc) per hour for 20 or 24 hours. Sometimes, continuous tube feedings are recommended for children who are at risk for aspiration, frequent vomiting, dysmotility (slow stomach emptying), or who receive j-tube feedings (jejunostomy tube, inserted into part of the small intestine). Remaining on a tube feeding through many hours of the day can perhaps limit a child from moving and getting around if they have to be connected to a feeding pump all day long. While a child may not have any other choice but to be on a continuous tube feeding, this does not mean they will not be able to explore their environment comfortably. Think about a child who will require a continuous tube feeding over a longer period of time as he becomes more mobile and develops more play skills. These are options to consider with the team when a child on a continuous tube feeding becomes mobile:
- The family may ask the home equipment company for an extra long extension tube. Various lengths exist, and the longest may provide the child extra room to move around.
- The family may ask the home equipment company for a more portable tube feeding pump, as this will be easier to move and a lighter weight for the family to carry around. Many portable pumps do not require the use of a feeding pole and continues to work when in motion. The manufacturers have produced portable feeding pumps with an active child in mind, and they should continue to work even if they are upside down, lying flat, or turned over and over.
- The family may ask the home equipment company for a backpack to carry the portable pump and contain the feeding bag. Eventually, the child may wear the backpack on their back; however, we want to increase the weight in the backpack gradually. Remember that the pump and backpack may not seem so heavy to you; however, it will be heavy for any toddler. Example: the Zevex pump, backpack, and 250 ml of formula weighs about 2.6 pounds. For a toddler who weighs 20 pounds, this is 13% of his body weight. This would be like a 150-pound adult caring a 20-pound backpack on his back all day. Carrying the backpack may be even more difficult for a toddler with low muscle tone, underdeveloped muscles, or low endurance. Expecting a child to basically carry 13% of his body without increasing the weight of the backpack slowly may affect their posture (causing them to sit bent over) and gait. What I like to do is discuss this with parents, and we will come up with a way to increase the weight slowly.
- First, the family can start with letting their child get used to wearing an empty backpack. The family may encourage the child by making a big deal about how fun it is to wear a backpack, maybe pointing out that Dora and Diego wear backpacks, or big sister wears a backpack to school. This may help the child be less resistant. If a child becomes resistant to wearing the backpack after a while, that is fine – just take it off and try again later, perhaps after a nap or when playing or going on an outing. Getting the child use to just seeing the backpack often may help her become more comfortable with it.
- Secondly, we decide on how to add weight to the backpack. I have suggested using blocks, such as the square wooden blocks with the ABC’s on them. Usually, the standard-size wooden block weighs about 1.5-ounce. The family could start by adding 3 blocks (4.5 ounces) to the backpack and allow the child to carry the blocks around for 3 to 5 days, increasing the weight by 3 more blocks every 3 to 5 days. Once the child is up to carrying 18 blocks, the next step would be to replace the blocks with the child’s feeding pump and formula bag.
- If the family feels that their child may tug at their tubing or get it caught on something, regardless of whether they’re using a standing pump or a backpack, you can suggest that the family tape the tubing to the outside of the child’s shirt and around to his back. Often, the child is more excited that they can move around they do not even pay much attention to the tubing.
This is just one way a dietitian/nutritionist can provide support to the IFSP team in providing more information to support the whole child. Through teaming opportunities, discussions around a child’s nutritional needs and the family’s concerns can lead to outcomes, and a nutrition assessment may be a helpful way to access more information. Talk to the IFSP team if you feel a family you are supporting could use the assistance of a dietitian/nutritionist.