Nutrition and Feeding Issues with DIPG Patients
Good nutrition is important for your child’s growth and general health. If your child is having issues with feeding/eating, it is important to find out why. For example, if your child is nauseated from chemotherapy, medicines can be given to help calm his/her stomach. If your child is too tired to eat, finding ways to deal with fatigue might help him/her have times when he/she feels better and can eat. Having a meal schedule might also help your child eat regularly, as multiple doctor appointments, other family obligations, and the chaos of daily life can be overwhelming and cause a child to lose his/her appetite or forget to eat.
If family members and friends have asked how they can help, consider letting them make meals for your family so you can concentrate on caring for your child. Your child’s illness may change over time, and there may be times when he/she wants to eat more or eat less. Things that will affect nutrition and the ability to eat for a child with DIPG include the following:
- Weight gain: Your child may gain weight rapidly when he/she is on steroids. You may notice that he/she has a ravenous appetite often way out of proportion to what he/she normally eats. It can be very difficult to control your child’s appetite, but some tips include limiting high-calorie foods and salty foods. This can be difficult, because your child may want to eat only certain foods. Let him/her eat his favorite foods but in moderation. For example, you may try saying something like, “You can have the chocolate ice cream one time today. If you eat it now, then you cannot have any more until tomorrow. Are you sure you want to eat it now, or would you rather try _______ now and save the chocolate ice cream until later today?” This approach does not always work because children often live in the present moment and to them "later" really does not exist; later means never! You can also try a sticker chart or some reward system so your child has to eat certain “good/healthy” foods in order to earn the privilege of eating the less-healthy foods. This can be a real challenge, so don’t hesitate to talk with your child’s social worker, nurse, or child life specialist about tips to help you manage your child’s food cravings. Consulting with a nutritionist or dietitian may be helpful for learning ways to decrease calories in your child’s diet.
- Weight loss: On the opposite side of the spectrum, your child may lose weight. This might happen while your child is getting certain chemotherapy medicines or radiation therapy, or when being weaned off steroid medicines. As frustrating as it may be to have your child eating all the time, many parents find it as frustrating to see their child not eating and losing weight. Things that can help counteract weight loss are using supplements, such as Pediasure©, Boost©, or Carnation Instant Breakfast©, or other supplements that your doctor or nurse practitioner recommends. Your health care team will tell you which supplements they recommend and how much to give your child each day. Consulting with a nutritionist or dietitian may be helpful for gaining tips about increasing calories in your child’s diet. There are also medicines that can be used to stimulate your child’s appetite, but before using any you should ask your health care team if they think an appetite stimulant would be helpful for your child. Also remember that if your child is tired and less active, his/her metabolism slows down and he/she does not need as many calories. Your child may also have cravings for a certain food and then only take one or two bites. This can be quite frustrating for parents. Try to let your child eat and drink what he/she wants. Sitting down to a big plate of food or large glass of a liquid beverage can be overwhelming for a child. Try to offer small, frequent meals. You will be surprised by how the calories add up by just taking a few bites many times a day!
- Difficulty swallowing: Many children with DIPG have difficulty swallowing. This is most common with thin liquids as they move more quickly through the mouth and throat which can result in aspiration, but can happen with any food or liquid. If your child coughs or chokes when he/she eats, it may be a sign that he/she is having trouble swallowing. If your child has difficulty swallowing solid foods, try cutting food up into very small bite-sized pieces, serving soft foods, and encouraging him/her to chew food thoroughly and not rush while eating. If your child has difficulty swallowing thin liquids, try using a syringe to get a stream of liquid down, using thickening agents to bulk up thin liquids, or using thicker versions of similar liquids (e.g., milk shakes or liquid yogurts instead of milk, and applesauce instead of apple juice).
- Inability to eat by mouth: There may come a time when your child cannot take food or liquids by mouth, so this is a challenge to think about in advance. Ask your child’s doctor or nurse practitioner about the different causes of the inability to eat or drink. Knowing about possible causes will help you notice signs and make decisions about how to help your child if that time comes. If your child reaches this point, the doctor or nurse practitioner will conduct a physical exam to find out the cause of the problem. If it is a mechanical problem, such as the vocal cords not closing properly or aspiration (when food goes down to the lungs instead of the stomach), then maybe your child can receive fluids and nutrition through an alternate method, such as a nasogastric tube (NG-tube) or gastrostomy tube (G-tube). If the DIPG is quite advanced and your doctor or nurse practitioner thinks your child is nearing the end of life, then putting your child through the discomfort of having a tube placed to receive fluids and nutrition may not be the decision you want to make. If your child’s DIPG is advanced, he/she may not want to eat as his/her metabolism and digestive system slow down. It is not uncommon for the appetite to significantly decrease as a child’s illness becomes more advanced.
- Artificial fluids and nutrition: This is the term the health care team uses for giving fluids and nutrition through a nasogastric tube (NG-tube) or gastrostomy tube (G-tube). The term “artificial” simply means that the fluids are given through a tube rather than orally. An NG-tube is a small flexible tube inserted through the nose, down the back of the throat, and into the stomach. The tube can stay in from a few weeks to a few months, and it is used as a temporary way of giving fluids and nutrition. If your child has problems with nausea or vomiting, he/she may vomit up the tube and the tube may have to be replaced more often. A G-tube is a bit larger and is placed directly into the stomach or intestines by an interventional radiologist, gastroenterologist, or surgeon, usually while your child is under anesthesia or sedation. A G-tube can stay in for about 6 months but can be easily changed by a home care nurse or—in some cases—you may be taught how to change the tube. Either an NG-tube or G-tube can be hooked up to a feeding bag to give liquid nutrition through either several bolus (large) feedings at different times during the day or by a small amount being dripped in with a feeding pump over 10 to 12 hours at night. Different types of liquid feeding formulas are used depending upon the nutritional needs of your child. Your child's nurse or nutritionist will go over the best type of schedule for your child and explain how to manage these feedings at home.
These types of feedings are not without complications, so your doctor or nurse practitioner should review the risks and benefits with you so you can make an informed decision. In general, if the benefits are great and the risks are small, a feeding tube might make a lot of sense. If your child is at great risk for complications from a feeding tube (for example, if he/she is not able to process and eliminate the feedings, causing swelling and fluid accumulation in the lungs) then a feeding tube may not be the best choice. Having open, honest discussions with your health care team will help you to make these decisions.
Nausea and Vomiting
Nausea (feeling sick to your stomach) and/or vomiting can occur for many reasons. Your child may have initially had nausea and/or vomiting as one of the first symptoms of his/her DIPG. Usually this is due to increased intracranial pressure caused by swelling and pressure on sensitive areas of the brain. To combat sickness, medications such as steroids can help decrease swelling in the brain. Other things that can cause nausea and/or vomiting include constipation, fluid and electrolyte imbalances, chemotherapy, and certain medications (such as opioids). Tips for decreasing nausea/vomiting include:
- Giving anti-nausea medications, such as Ondansetron or others that your doctor or nurse practitioner might prescribe for your child, about 30 minutes before chemotherapy and/or radiation treatments and as instructed at other times of day, as needed.
- Giving your child's medications with food or after a meal, depending on the medication.
- Feeding your child small, frequent meals.
- Giving your child smaller amounts of liquids with meals and avoiding carbonated beverages.
- Avoiding greasy, fatty foods.
- Avoiding foods with strong odors.
- Putting a drop of peppermint oil or other strong-flavored oil of your child's preference (available at your local nutrition store and some pharmacies) on your child's upper lip, just below the nose.
- Using aromatherapy (described in more detail in the section below about complementary and alternative therapy).
- Taking your child outside to be in the fresh air or having your child sit near a fan.
Constipation, or difficulty having a bowel movement, can cause discomfort for your child and lead to pain, nausea, vomiting, decreased appetite, and irritability. Constipation is generally defined as not having a bowel movement in more than 3 days, pain or crying with passing stool, or the inability to pass a stool after 10 minutes or more of trying. You may notice that your child's bowel movements are hard or small pellets, which are also signs of constipation. Constipation is a common problem in childhood and can be even more of a problem for a child with DIPG when taking certain medicines or when the tumor involves the spine. Track your child’s normal bowel movement routine. For example, do they usually have a bowel movement every day, several times per day, every other day, etc.? If your child does not have a bowel movement per his/her usual routine or you notice that the stools are hard or difficult to pass, contact your child’s doctor for advice.
Several things can help prevent constipation:
- Have your child drink plenty of fluids, especially water.
- Increase fiber in your child’s diet and encourage him/her to eat fresh fruits and vegetables.
- Increase your child’s physical activity.
- Establish a bowel regimen (i.e. having your child sit on the toilet for 5–10 minutes after meals and at bedtime).
- Consider giving your child a stool softener or stimulant (laxative), but first talk with your child’s doctor or nurse practitioner for advice about which type is best for your child.
- Avoid suppositories or enemas unless recommended by your child’s doctor or nurse practitioner.