Symptom Management
Gastrointestinal System
Feeding And Nutrition
Positioning for Feeding
Feeding Difficulties
G-E Reflux
Nasogastric And Gastrostomy Tubes
Children with progressive neurological diseases almost always develop difficulty with feeding. Initially, they may be able to breast feed or take a bottle; although they may have difficulty “latching on” and the mouth may have to be held in a certain way to improve the grip.
It is important to monitor the caloric and nutritional value of foods that are given orally. Baby food may not provide enough calories as the child grows. You may have some questions about your child's nutritional condition: Is my child's weight O.K.? Is my child getting enough liquid? How many calories a day does my child need? Having a nutritionist available for periodic consultation is helpful for both oral and tube-fed children.
Oral feedings can be a joyful, special time. This may be a time for lots of vocalizations, especially if your child is very hungry. This can be a good time to encourage language development by increasing the child's understanding of certain words and his or her anticipatory response. For example, saying “ready” and repeating the names of favorite foods on a consistent basis before the spoon is introduced are good techniques.
(See “Stimulation, Play, Communication” section.)
Feedings can be incorporated into family meals as a special time for all to be together. The children enjoy hearing familiar voices and seeing familiar faces, if they are able. This encourages sibling bonding and helps to establish a sense of “normalcy.”
Since these children generally do not progress to sitting up on their own, they are usually fed in our arms or in their strollers or other seats that give support to the head and neck. Correct positioning prevents the children from arching or extending, and helps to “break” their high tone (muscle tension), enabling them to be more relaxed during feeding.
They need to be fed in an upright position and the head needs to be in midline, not extended back, in order to help prevent aspiration and reflux. (See G-E Reflux section.) When not being held, your child can be propped up to a sitting position with lots of pillows and stuffed animals for comfort and support.
Accepting the fact that your child needs special equipment is a gradual process. Because very young children can “get by” with strollers for transportation for quite some time, the use of a special seat for feeding (e.g., a Tumble Form seat) in a restaurant may present the first situation in which you will face the issue of dealing with “special equipment” in public. (See Dealing with Special Equipment section.)
“I felt like everyone's eyes were on us in a restaurant, saying ‘What's wrong with that child? He should be sitting up by now.' In the beginning, I used to block out their stares. It gradually got easier.”
There may be a period of time during which your child eats and drinks normally. Eventually, problems with swallowing affect the eating process, and taking anything by mouth becomes difficult. The child may start to cough or gag during feedings. He or she may develop a poor suck. He or she may begin to aspirate food which can cause pneumonia, or have “mini” aspirations which can precipitate bronchospasm, and cause wheezing. (See Respiratory section.)
The mouth muscles are designed for sucking during infancy, and as the child grows, the muscles adapt for eating. In the neurologically impaired child, the muscle patterns may never progress past the sucking stage.
Liquids generally present the first feeding problem. It can be helpful to thicken liquids with gelatin, baby cereal, oatmeal or bran flakes. Thick It, a commercially available product used to thicken fluids, may also be used. When eating strained foods, the children often will begin a “chewing” style of eating, again because of lack of coordination. It is helpful to use a vinyl coated baby spoon to protect your child's teeth. Helping them to purse the lips by squeezing the cheeks together may make chewing and swallowing easier.
Your child may open his or her mouth more easily if he or she smells the foods first (and you can also encourage understanding of language if you say what the food is prior to introducing it). Another way of getting the mouth open is to apply firm pressure on the corner of the jaw and manipulate the area (also a useful technique for dental care). You can encourage chewing by placing your hand along the lower jaw bone and moving it up and down.
To desensitize a hypersensitive mouth and thus aid in swallowing, one family suggests playing inside and outside the mouth with toys and a NUK® brush (a dental stimulator with soft plastic protrusions on the end of it). A Toothette (foam pad on the end of a stick used for dental care) can be used as well.
Another family suggests using a nipple designed for babies with cleft palate. This is available free of charge from Mead-Johnson. One parent suggests a NUK cross-hatch nipple. Cutting off the top or widening the opening of a regular nipple also works. The child can then “suck and chew” out the thickened liquids. A First Years Infa-Feeder was also recommended for feeding thickened meals. Evenflo makes a similar product.
Invariably, the entire feeding process eventually becomes very time consuming. The children need to be fed slowly to prevent aspiration, and they tend to eat slowly. Feeding can be very tiring for our children, and they may need to rest during the meal. By experience, we have learned that it is also important to feed them on time. If the child is very hungry, the resulting irritiability may increase tone (muscle tension) and reflux (see below) and thus further complicate the process.
Very often the feedings are done with the child in our arms. Although this is a very special bonding time, the increased length of the feedings, and the child's increased weight can combine to make this method of feeding an exhausting experience for parents. Having another adult around to help with feedings makes the process easier.
Reflux is a common problem affecting many children (also called G.E.R. or gastro-esophegeal reflux). In reflux, the acid from the stomach regurgitates up the esophagus because of poor muscle tone of the sphincter muscle at the end of the esophagus. In children with progressive neurological disorders, who are already beginning to have difficulty swallowing liquids, this chronic regurgitation of stomach acids further compounds the problem.
Chronic reflux causes irritation of the esophagus resulting in “heartburn”, an inflammation of the esophagus (esophaghitis) or a much more serious problem, ulcers of the esophagus.
Pain from reflux may result in irritiability and an increase in muscle tension. As mentioned earlier, irritiability (e.g., from hunger) seems to precipitate reflux, so it is important to anticipate the child's needs as much as possible to avoid this cycle of complications.
Although reflux can be somewhat controlled by certain medications, feeding in the upright position, and by elevating the head of the bed on blocks, it is apt to remain a chronic problem. Positioning your child on his or her side (sidelying) when in bed, is the best bed position to help prevent aspiration from reflux or vomiting.
Nasogastric And Gastrostomy Tubes
Chronic reflux, exhausting and difficult feedings, and problems with dehydration from lack of adequate fluid intake are often the precipitating factors leading to the decision to begin tube feedings. A video esophagram can be a helpful test in determining whether or not tube feedings are necessary. In this test, an x-ray “video” of the esophagus is taken while the child is eating.
There are generally two methods of tube feeding to choose from. Some parents choose a nasogastric tube (N-G tube) in which a tube is inserted into the child's nose and threaded into the stomach.
“We chose this option because we felt that we did not want to put him through the gastrostomy operation since his health was so bad.”
The advantage of the N-G tube is that it is a non-surgical procedure and can easily be removed (it is usually replaced once a month). The disadvantage is that the N-G tube can be irritating to the nose and can involve some risk (the tube may inadvertently slip into the lungs). It needs to be taped to the nose to prevent dislodging. It is essential to check for proper placement prior to starting a feeding by placing the end of the N-G tube in water to check for air bubbles. If air bubbles are present, the tube is in the lungs. The N-G tube then needs to reinserted properly. While many parents learn to handle this procedure, proper instructions and training are very important. You will want to give yourself a chance to feel comfortable with N-G tube insertion before attempting it on your own.
Some parents choose gastrostomy tube (G-tube) placement, which is a surgical incision into the stomach through the abdomen. In conjunction with gastrostomy tube placement, a fundoplication is usually done to help the reflux problem. Fundoplication is a surgical procedure in which the stomach is “enveloped” around the end of the esophagus, thus preventing stomach contents from “refluxing” up into the esophagus.
A parent may choose a traditional G-tube, made out of silastic or latex, or a “button” which lays flat against the abdomen. Insertion of the “button” may have to wait until the original incision is healed. The decision to place a G-tube or use an N-G tube is a big one, as it is often the first major intervention in our children's lives. Indeed, some families may decide not to tube feed at all. One struggles with the desire to protect the children from such intervention, while trying to find ways to make them most comfortable.
“We discussed the idea for months. It was a most difficult decision. We were strongly against medical intervention that would prolong Matthew's life. Yet the part that was so painful was that we did not want to be responsible for killing him, since feeding Matthew had become a risky activity.”
“Feeding had become so difficult; he was losing weight and he had so many respiratory problems. We prolonged it for as long as we could. But once the crisis of the surgery was over, we knew that we had made the best decision.”
“When my husband and I came to the full realization of what was going to happen to our son, we decided not to place an in-dwelling gastrostomy tube. This decision was made in private without counseling from anyone. It was made over a period of months, as we witnessed the progression of this devastating disease. We decided that to the best of our knowledge, when our child could no longer eat without surgical intervention, he would be permitted to die.”
Most parents use a traditional G-tube pump for the regular feedings which can be run by battery for some time after being unplugged. A gravity fed bag can be used for traveling; however, there is a danger that the formula will go in too quickly, so it must be monitored carefully. Another method is called a bolus feeding (a certain amount going in all at once) in which a 50cc syringe is refilled with food and given evenly over an hour or so. This technique is handy for traveling, or in case of electrical failure.
You may choose a traditional formula or you may make your own in a blender from table food. The following recipe was made by a parent each morning for her sixteen month old and used throughout the day. The recipe was given to her by a nurse who researched G-tube feedings.
It is important that both the noncommercial and commercial feedings be evaluated periodically for correct caloric and nutritional content as the child grows. It is also important to give plenty of “free” water (plain water), and to flush out the tube with water after each feeding to prevent blockage. Your health care provider can assist you with this information.
Even when a G-tube is placed, it is important to continue some level of oral feedings for as long as possible to maintain the swallowing ability as well as to stimulate the sense of taste and smell. Considering, however, that oral feedings at this stage may be very difficult and that adequate nutrition is provided by tube feedings, “tastes” of food are sufficient to maintain these skills.
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Another method of stimulating the sense of taste is to use a foam swab (Toothette) dipped in flavored water. One occupational therapist calls this “gum on a stick” because children like to chew on it.
Children with neuro-degenerative disorders eventually develop problems with bowel movements. This is due to changes in the nerve cells of the intestines that result in a decrease in gastric motility (movement of the stool through the intestine) and is complicated by the relative inactivity of our children. Certain medications can also aggravate the problem.
It is not uncommon for a child to go several days without a bowel movement and not feel uncomfortable. However, severe constipation can cause a great deal of discomfort, and measures should be taken to prevent this problem.
As it becomes more and more difficult for your child to accept adequate amounts of fluid by mouth, severe constipation can result. Once tube feedings become the main source of nutrition, the problem with constipation generally subsides, although this is not always the case.
It is important to include plenty of “bulk” or “roughage” and fluids in the diet of an orally fed child. Fresh fruits, vegetables, and grains such as bran flakes should be incorporated into the diet. As liquids become more difficult to take, they can be thickened with bran flakes. If prune juice is used, keep in mind that it can cause diarrhea when given in large amounts.
For G-tube feedings, one parent recommmends a soy-based formula to help with constipation. Another suggests adding one tablespoon of vegetable oil to the food or three tablespoons of wheat germ. Ensure is a formula enriched with fiber. Natural laxatives, such as Metamucil®, are generally better for the child as they provide bulk which helps to stimulate the bowel. One family recommends Malt-Supex powder be added to each feeding.
Even though our children can't get exercise in a traditional way, exercising the arms and legs passively (someone else moving the arms and legs) may be helpful in improving digestion. Massage of the abdomen along the large colon (up the right side, across the top, down the left side) may help to move the stool along.
It is also not unreasonable to place the child on the potty chair after feeding to take advantage of the gastrocolic reflex, or urge to have a bowel movement at this time. Thus gravity is allowed to help with this normal process. The child can be held on the potty chair in a slightly bent forward position. Of course the child will enjoy any positive reinforcement after a job well done!
It is best to try to prevent constipation by the above measures. Once the child is constipated, there are several ways to deal with the problem. Fleets® enemas for children are good. The containers can be cleaned and reused by making your own solution of water and liquid soap (one tablespoon soap and fill with water). Mineral oil enemas (the plastic containers can also be cleaned and refilled with mineral oil) or glycerine suppositories can be used as well. Stool softeners are also available under various names. And stimulating the rectal area with a lubricated cotton swab or thermometer may encourage a bowel movement.
Occasionally it is necessary to disimpact (manually remove) the rectum of stool. Use a latex glove with lubricating jelly (or a finger cot). You will want to make sure that your finernail is short before performing this procedure.
Continued severe straining during bowel movements may cause hemorrhoids, rectal fissures or even rectal prolapse (where the rectum actually herniates outside the anus). It is important to keep constipation under control to avoid these complications. If the rectum does become inflammed with hemorrhoids or fissures, ask your health care provider for a hemorrhoidal cream with steroid (Anusol®-HC) which provides a soothing, anti-inflammatory effect.
Medications for children generally come prepared as liquids for oral use. To make them more palatable, they are generally sweetened, artificially colored, and have alcohol added. You may prefer to shop around for over-the-counter medicines for children that are prepared without sugar or alcohol (e.g., cold or pain medications).
Because of these additives in liquid medications, you might ask about getting medications prescribed in pill form. Pills can be crushed with a mortar and pestle (found in gourmet food stores) and given in a feeding tube or by mouth in apple sauce or some other food. The pills can also be soaked instead of crushed. Some pills may be difficult to dissolve, so you may have to go back to the liquid form.
Consider rectal suppositories as another means of administering medications. Tylenol® (acetaminophen) is available by suppository. Also available are glycerine suppositories for constipation. Other specific medications mentioned by parents are Tigan®, Phenergan® and Dulcolax®. Ask your pharmacist if a particular medication your child needs is available in suppository form.
When giving medication via feeding tube it is important not to mix it with the feeding. If the feeding has to be stopped for some reason or another problem occurs, you will not know how much of the medication was absorbed. It is also important to flush the tube with water after administering a medication through the tube to ensure that the whole dose of medication enters the stomach.