|Feeding children with Cerebral Palsy|
To explore in detail the feeding of a child with cerebral palsy, we recommend chapter 8, by Marian Browne within the 2003 text “Children with Cerebral Palsy” by Archie Hinchcliffe. The chapter is titled, ‘Assessment and management of eating and drinking difficulties’ and explores the subject from a number of perspectives and offers additional references at the end. The chapter begins…
“Many children with CP have eating and drinking difficulties. These range from relatively minor difficulties in coordination of oral movements causing eating to be slow and with excessive spillage, to severe incoordination of the swallowing mechanism, causing ill health and even life threatening conditions. Mealtimes may stretch up to 15 times longer than for other children…and even despite this lengthy eating time, the children often do not receive adequate nourishment. Bax (1989) found that 20 per cent of the children with CP in his study were severely underweight or badly nourished due to eating and drinking problems. This represented half the children who had eating and drinking problems.” (Children with Cerebral Palsy: p. 157)
“Self-feeding can begin as early as nine months. Small babies automatically bring everything they handle to their mouths. Eventually this is turned into the skill to bring food to their mouths. Teaching from carers, children learn to turn automatic reaction into a delicate and quite sophisticated activity. Some children who have CP will miss out on these early learning opportunities. They can be helped enormously if their parents are taught to compensate helping them to feed themselves from the appropriate age.
To get advice on this one aspect of a child’s life you may have to go to as many as five different professionals. The physiotherapist will concentrate on the best positioning of your child. The dietician can advise on the best kinds of food to give her. The speech and language therapist can advise on the best ways to achieve a good chewing pattern and mouth closure. The occupational therapist can advise appropriate feeding equipment and seating. Finally, you may need to discuss any digestive problems with the consultant. In order to give relevant advice it is essential that these professionals observe your child while she is eating, and it is preferable for them to work together to ensure that they do not give contradictory advice. However, it is not an easy task to gather so many experts together to ensure that they do not give contradictory advice. However, it is not an easy task to gather so many experts together at the right time for such a consultation and, even if you can, it is highly unlikely that a child will be willing to carry her normal feeding routine with such an audience. At the end of the day it is up to the carer and child to work out the most suitable feeding routine, having taken as much advice from various sources as they can.
Make sure your child can see the plate, the food which is on it and the spoon bringing the food from the plate to her mouth. This is especially important for children with hearing impairment. Talk to her about the process and let her see, feel and smell the food, feel the plate and the spoon and get a sense of their proximity to each other and to her.
Children without disabilities go though a stage when they get very messy during feeding. There is a danger that carers of children who have disabilities will keep their children extra clean either because it is easier to do so because they are not attempting to feed themselves or because the carer feels (maybe even subconsciously) that it accentuates the ‘look’ of disability.
It is important that you are aware of where the food is ending up. If food is left around a child’s mouth throughout a meal it may cause her to lose sensitivity or the ‘feel’ of where the food should be. However, there is no harm in a child with disabilities getting the same opportunity to experience food fully by getting her hands in it, for example.
It is important to ensure that the child can see the spoon coming to her mouth when you are doing the feeding, and there are various techniques to encourage good chewing and mouth closure which a speech and language therapist may be able to advise on. Some children with CP have difficulty keeping their mouths closed and/or have a habit of thrusting out their tongue when trying to eat. It can also take a long time to move from the mouth movements associated with sucking from the breast or bottle to the rounded chew required to break down solid food in the mouth. If you child has difficulties with this, the move from the sucking to chewing may need to be encouraged slowly and patiently by very gradually increasing the density of texture and later on the ‘lumpiness’ of the food offered. Some children with CP have difficulty with their gag reflex. This means that they find it hard to cough up bits of food that go down the wrong way. If this is a particular problem for your child, advice should be sought from a speech and language therapist or your pediatric consultant.
Whilst your child needs your assistance with eating you could give her the opportunity to try to feel herself at each meal, provided your are satisfied that she has eaten sufficient food for nourishment. This can be done however severely affected a child is. At the very least you can place a spoon in the child’s hand and guide it as far as is comfortable to give her first-hand experience. If she is able to get her hand to her mouth you can guide the spoon all the way. You can also encourage her to pick up food (such as cakes, biscuits, bread or fruit) in her hands and bring it to her mouth. Make sure, however, that such an activity does not contribute to her receiving insufficient nutrition. If in doubt consult a dietician to ensure that your child is getting an adequate diet before introducing this kind of self-help.” (The Cerebral Palsy Handbook: 103-104)
“Feeding is a problem for many babies and children with cerebral palsy. For some children, the problem is a medical one. Some children, for example, are more likely to choke on food because they have no gag response. If your child has trouble feeding, you should naturally rule out all possible medical reasons before proceeding further.
If a medical examination fails to turn up any condition that would make feeding difficult for your child, the next step is to analyze your child’s problems in the feeding process. In most instances, early difficulties with feeding will turn out to be related to problems with either movement or touch, or both.
Movement problems that can complicate feeding for children with cerebral palsy include problems with jaw control and with tongue, lip, and cheek mobility. These movement problems can usually be traced to having muscle tone that is too high or too low. To bring your child’s feeding problems under control, you must therefore help him bring his muscle tone problems under control. Through your holding or positioning style, you should try to normalize your child’s tone as much as possible before beginning the feeding process, and to maintain it until you are through. If your child still has trouble controlling his jaw or closing his lips, you may have to provide some external support. For instance, you may need to use your hand to support your child’s head or to help him close his jaws. As Chapter 7 discusses, a speech-language pathologist or an occupational therapist can help you customize these techniques for your child.
In addition to problems with movement, children with cerebral palsy sometimes have sensory problems that make feeding difficult. Some children, for instance, are overly sensitive to touch in and around the face and mouth. They find the touch of food, a nipple, a spoon, or even a hand unpleasant and may react to touch around the mouth by biting down, turning away, refusing to open their mouth, or even vomiting. This overreaction to touch around the mouth is referred to as oral tactile defensiveness. The condition may be so severe that any attempts at feeding are unpleasant and sometimes impossible, or it may be so mild that a child only rejects foods that combine more than one texture – for example, yogurt with chunks of fruit.
Some children with cerebral palsy have a feeding problem that is the opposite of oral tactile defensiveness. Instead of overreacting to touch around the face and mouth, they under-react. Because they do not have adequate feeling in the mouth, it is hard for them to know how much food is in their mouth, where it is, or how to move it around their mouth and when to swallow. Children who have a mild form of this condition often do not know or feel when their chin is wet from drooling or that there is food in their mouth or on their chin.
A child who overreacts or under-reacts to touch can improve feeding skills through a careful program of controlled oral motor input – that is, through a program that gradually desensitizes or sensitizes him to touch in and around the mouth. If your child is oversensitive to touch, it is best to begin touching him (with your hand or a toy) outside the mouth and slowly work up to touching him inside the mouth. Remember that firm pressure is more acceptable to your child than light touch. If you child will now accept your hand, you may want to guide his hand to do the stimulation. If your child is under-responsive to touch, you will want to bombard him with input from different types of touch and texture. An occupational therapist or speech-language pathologist can show you how to use different food temperatures and textures to increase your child’s awareness of what is in his mouth. You may also find that placing a mirror in front of your child during mealtimes helps his feeding skills.” (Children with Cerebral Palsy: p. 122 – 128)
“Children with cerebral palsy often have associated feeding and swallowing difficulties. Common problems affecting feeding include tongue thrusting, prolonged or exaggerated bite reflex, abnormally increased of decreased gag reflex, tactile hypersensitivity, and drooling. Coughing, chronic wheezing, or bronchitis can be secondary to aspiration during swallowing or gastroesophageal reflux. An oromotor evaluation and clinical feeding assessment can provide valuable information regarding the oral phrase of swallowing, but it may fail to identify disorders in the pharyngeal and esophageal phases of swallowing, such as aspiration, which may be detected with a videoflouroscipic study.
To help a family overcome the problems that arise in feeding a child with cerebral palsy, a team approach should be implemented. This team should include all relevant health care professionals and the patient’s family. The professional members of the feeding team should include a gastroenterologist, occupational therapist, speech therapist, dietitian, nurse, and psychologist. The evaluation should encompass the patient’s ability to suck, masticate, swallow, control head and trunk, maintain nutritional status, and sustain an adequate level of consciousness (neurologic status). The family’s desires and expectations in regard to the child’s feeding capacities should also be considered. (The Cerebral Palsies: Causes, Consequences, and Management: p. 309)
“Feeding for the Child with Cerebral Palsy: Contains suggestions on how to help the child during meals and how to train him to eat by himself.”
“Difficulty with eating and swallowing -- also triggered by motor problems in the mouth -- can cause poor nutrition. Poor nutrition, in turn, may make the individual more vulnerable to infections and cause or aggravate "failure to thrive" -- a lag in growth and development that is common among those with cerebral palsy.”
“Poor nutrition, growth failure and the consequences of these were long regarded to be inevitable in persons with severe disabilities associated with cerebral palsy (CP). In recent years, technical advances in tube feeding and readily available commercial feeding formulas have changed that picture.”
“Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy.” Research abstract
“Many children with disabilities have difficulty with eating and drinking. These difficulties may be due to poor posture or head control and limited movement of the tongue, lips or jaw.”
“Chewing may be difficult. The suck and swallow pattern may continue even after infancy. Chances of aspiration are higher as the larynx may not close in time for the swallow.”
“Sometimes people with cerebral palsy have problems trying to eat, such as…”
*Feeding Young Infants and Children with Special Needs* (30 minute video for $198 each) from Learner Managed Designs, P.O. Box 747, Lawrence, KS 66044, (800) 467-1644.