Childhood Brain and Spinal Cord Tumors
Feeding by tube and IV
Sometimes, it becomes necessary to feed children intravenously or through a gastric (G-tube) or nasogastric (NG) tube. Although intravenous (IV) feeding and feeding by tube may require additional hospitalization, it helps if parents understand the benefits clearly. If a child with cancer becomes malnourished, events are set in motion that can have grim consequences. As appetite and weight decrease, the child’s ability to tolerate and recover from treatment diminishes. The child becomes progressively weaker and his resistance to infection decreases. Infections and weakness may require interruptions in treatment. To prevent this scenario, most protocols require tube or IV feeding after 10 percent of body weight is lost. The two types of supplemental feeding are described below.
Total parenteral nutrition (TPN)
TPN, also known as hyperalimentation, is a form of IV feeding used to prevent or treat malnutrition in children who cannot eat enough to meet basic nutritional needs. Below are some of the many reasons why your child may require TPN:
- Severe mouth and throat sores that prevent swallowing
- Severe nausea and vomiting
- Severe diarrhea
- Inability to chew or swallow normally
- Loss of more than 10 percent of body weight
TPN ensures that your child receives all the protein, carbohydrates, fats, vitamins, and minerals she needs. TPN is administered through the central venous catheter, but children receiving TPN can also eat solids and drink fluids.
My daughter needed TPN for 2 weeks after her stem cell transplant. They told us ahead of time that it would be necessary, and they were right. She got terrible sores throughout her GI tract and couldn’t drink or eat. They just hooked the bag up to her Broviac®. After a couple of weeks, she started gingerly sipping small amounts of water and apple juice. For some reason, I just didn’t worry about her eating. I assumed that when she could eat, she would. She was a robust eater before her illness, so I thought that would help. Before we left for home, she asked for a hospital pizza (yuck!) and ate a few bites. Her eating at home quickly went back to normal, although it took some time to regain the weight she lost.
In most cases, TPN is started in the hospital. Each day the concentrations of glucose, protein, and fat will be increased in a step-wise fashion, and doctors will assess your child’s tolerance for the mixture. Generally, TPN is given 8 to 12 hours per day, depending on your child’s unique situation. The infusion may be delivered over the hours that work best for your family. If your child attends school, overnight infusions will probably work best. If your child is at home during the day, infusions during these hours will give the entire family a better night’s sleep.
Be sure to request a small portable infusion pump and backpack from your home care company so your child can go about his daily activities as usual. Your child’s oncologist may need to write a letter to your insurance company to verify your child’s malnutrition so this therapy will be covered.
Enteral nutrition
The doctor may recommend enteral feeding if your child requires supplemental nutrition and her bowel and intestines are still functioning well. Enteral feedings are preferred over IV, whenever possible. Enteral nutrition is feeding via a tube placed through the nose and into the stomach or small intestine (NG tube) or via a tube surgically placed directly into the stomach through the abdominal wall (G-tube). Nutritionally complete liquid formulas are fed through the tube. Your child’s oncologist and nutritionist will determine the appropriate formula for your child. Infrequent side effects of enteral nutrition are irritated throat, nausea, diarrhea, or constipation.
Rachel (age 14) used a backpack to carry a G-tube pump and her bag of Ensure® with her when she went out. When chemo was over, she worked for about a month with a psychiatrist who used hypnotherapy to get her to start eating normally again. After about 3 months, she was eating everything she used to. The tube was removed, and the hole closed on its own.
Alan (age 8) is currently finished with chemo and radiation therapy for medulloblastoma, but has weight issues. Alan has never been big on milkshakes since he started treatment. When he was in radiation his teeth were very sensitive to hot and cold. He does get Pediasure® through a G-tube, but we found a juice called Nestle NuBasic®, which is a 5 oz. can of calories and nutrition. The small size is great because it isn’t overwhelming for Al to drink, and he has put on almost 4 pounds after 2 weeks. (He is drinking three cans a day in addition to the Pediasure® at night, but not eating much “real” food yet.)
Enteral feedings are usually started in the hospital. If your child’s malnutrition is profound, he may initially require continuous feeding at a slow rate. These feedings will be increased as tolerated, with the eventual goal being four to six feedings per day. Blood tests can help the oncologist determine whether your child is malnourished in spite of the obvious weight gain that results from steroid therapy.
I feel good nutrition is very important to good health, but the reality of the situation with our child was that he hated anything nutritious when he was on chemotherapy. I could doctor it up, add the best toppings, make it look terrific, season it just right, and it would still be rejected. So I decided that since my son wasn’t allowed to make any decisions in regard to the pills, treatments, tests, or hospital stays, he wouldn’t be forced to eat everything nutritious if he didn’t want to. Whether this was a right or wrong decision, I don’t know. I just know that I served him a lot of processed foods during those years, and he’s a healthy and happy boy 10 years later. After he was finished with chemotherapy, however, we did require that he eat healthier foods.
Table of Contents
All Guides- Introduction
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites