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Original Articles Indian Pediatrics 2001; 38: 839-846 |
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Feeding problems in children with cerebral palsy |
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Correspondence to: Dr. A.K. Patwari, Flat No. 4, Lady
Hardinge Medical College Campus,
FEEDING problems are quite common in children cerebral palsy (CP). Thirty to 80% of disabled individuals feed with difficulty(1-3). They are especially at risk because of oral, pharyngeal or esophageal dysphagia and due to oral motor dysfunction (OMD). Furthermore because of communication difficulties many of them are unable to request food and drink. Presence of seizures worsens the feeding intake. As a result they do not receive adequate nutrition(1) resulting in growth retardation, reported in as many as 48% of children with neurodevelopmental handicaps(2). Nutritional rehabilitation can be quite rewarding in these children. However, lack of awareness of parents regarding the need and possible remedial measures overshadows any hope to improve their nutrition. This study was conducted to determine the magnitude and nature of feeding difficulties in children with cerebral palsy; to assess parental awareness about the feeding problems and nutritional status of these children; their nutritional status and extent of growth retardation in comparison to normal children; and to evaluate response of nutritional and therapeutic inter-ventions on feeding problems and nutritional status of these children. Subject and Methods The study was carried out from April 1998 to April 1999. Children of either sex less than 12 years of age with cerebral palsy were enrolled randomly in the study. Equal number of age and sex matched normal children were taken for comparison of nutritional status and develop-mental quotient. Parents of these children were interviewed with the help of a pretested questionnaire to find out their perception of feeding problems of their children and their awareness regarding the need and potential for successful nutritional rehabilitation. Feeding problems were assessed by observing the feeding session of each child. Feeding skill assessment was based on Gisel and Patrick’s feeding behavior skill score(4). Score of 4 or less was regarded as normal, score of 5-8 was defined as inadequate feeding skills. Developmental age was obtained by using the Gasell’s development scale(5). Nutritional status was determined by measurement of weight, skinfold thickness and mid arm circumference. Weight was measured by electronic weighing machine to the nearest 10 g. Skinfold thickness was measured at biceps, triceps, Suprailiac and subscapular by Vernier caliper. Mid arm circumference was measured by non stretchable measuring tape graded in centimeters. Caloric intake was assessed by asking the mother about details of the type and amount of food which had been given to the child during the last one week (in the illness free period). A detailed history and thorough clinical examination of the case was performed to assess the type of neurodevelopmental handicap. Clinical classification of cerebral palsy (CP) included spastic, hypotonic, athetoid, ataxic and mixed. Severity was graded as mild (ability to perform age appropriate activities of daily living without help), moderate (semi independence in activities of daily living with ability to communicate using speech or formalized methods only and feeding skills limited to use of aids) and severe (total dependence of activities of daily living with no oral communication and no self feeding capability). Feeding problems were managed by nutritional rehabilitation which included oral sensorimotor normalization(6) for hypersensitive areas inside and outside the mouth. In this procedure, before each meal patient’s mother was advised to rub the child’s face and outer gums with a firm pressure of hands and fingers. Lips were rubbed, starting about 3 inches away, always stroking inward. Upper and lower gums were rubbed with index finger. This procedure was advised 3 times in one session and 3-4 sessions in a day. To normalize hyperactive gag reflex, maneuver of "walk" the tongue by pressing firmly with the handle of a spoon was used, each press spaced toward the back of tongue about one-half inch apart until gag area was reached. This procedure was performed 3 times in one session and 3-4 such sessions a day, each session performed before feeding with an empty stomach and food provided immediately after the procedure. Restricted temporo-mandibular joint movements were managed by up and down movements (7). Ten up and down movements were performed in one session and 3-4 such sessions in a day. Other maneuvers included positioning of child during a feed with flexion of hip, knee and trunk to reduce extensor dystonia reaction and in hypotonic cases gentle forward pressure on angle of jaw during feed and more secure seating posture(1), change in consistency of food according to severity of OMD to increase caloric intake(8), tube feeding during acute illness, jaw control and technique to reduce tactile hypersensitivity to reduce drooling(9). Teaching of parents and elder sibs about cerebral palsy and associated problems and their encouragement in the daily management of children with cerebral palsy(10) was also done. All enrolled patients were followed up in the Pediatric Gastroenterology and Nutrition Follow up Clinic of the hospital every week/fortnightly depending upon the nature of feeding problem and response to nutritional and therapeutic interventions. In the follow up, any change in feeding problems and caloric intake was assessed. Weight was measured every fortnightly and skinfold thickness measured monthly. The patients were followed up at least for 3 months. Statistical Analysis Wherever deemed necessary, suitable statistical methods like Pearson Chi-square test, Student ‘t’ test and Z test were applied to find the significance of data obtained. Results Our study included 100 children with cerebral palsy (CP) with mean chronological age of 2.5 years (range 1 to 9 years). The study included more boys (76%) than girls (24%) and most (75%) of them had spastic quadriplegic cerebral palsy (SQCP). Mean developmental age was 7.6 months (range 1 to 36 months). Most of them (99%) belonged to severe CP group. Presenting feeding problems were significantly less than the observed feeding problems (p <0.001). Parents of 90% patients were conscious about feeding problems of their children. Ten per cent did not perceive feeding as a significant problem but on observation by the authors and as reported by the parents in their subsequent visits, after they were briefed about what to observe during feeding sessions, even these children were also found to have feeding problems (Table I). Oral motor dysfunction (OMD) was observed in all cases and each category of cerebral palsy. SQCP and hypotonic patients had significantly poorer feeding skill score than the other groups (p <0.001). Mean duration of feeding session was 31.5 minutes (range 10-60 minutes). Duration of feeding sessions was longer in children with poor feeding and skill score. Main food of cerebral palsy patients consisted of liquid semisolid diet (Table II). Children with normal feeding skill score consumed mainly liquid plus semisolid and/or solid diet but those with inadequate feeding skill did not receive any solid food (Table II). Generalized tonic clonic and myoclonic seizures were present in 14% and 18% children, respectively. Swallowing problem, cough/choking, vomiting, recurrent chest infection, drooling and regurgitation were significantly common in children with seizures (p <0.001). Parents of 17% children perceived nutritional status of their children as bad, 34% as satisfactory and of 49% children as unsatisfactory. However, on actual evaluation, significant number of children reported to have satisfactory nutritional status by their parents were found to have poor nutrition as assessed by weight/age and more than 35% of these cases had severe malnutrition. Comparison with controls revealed that children with CP had significantly lower caloric intake (p <0.01), mid arm circumference (p <0.05) and skinfold thickness (p <0.001). SQCP and hypotonic patients had significantly poor nutrition than other groups (p <0.005) (Table III). Inadequate feeding skill score and marginal feeding skill score were observed to have significant negative effect on nutrition in comparison to normal feeding skill score (p <0.001). Inadequate feeding skill score also had significantly more adverse effect on nutrition in comparison to marginal feeding skill score (p <0.001) (Table III). Table I - Presenting and Observed Feeding Problems
Thirty per cent parents believed that feeding problems of their children related to neuro-developmental disease could not be improved. Parents of 25.5% children carried the impression that feeding problems could be cured only by exercise and 22% believed that both medicine and exercise could help. All the cases were followed up for a period of 3-10 months (mean 5.4 months). In each follow up visit AG (first author) observed the feeding sessions of these cases and provided appropriate advice. Duration of feeding sessions ranged from 10-60 minutes (mean 31.5 minutes); 10-25 minutes (25%), 25-30 minutes (38%), 30-45 minutes (20%) and 45-60 minutes (17%). Nutritional rehabilitation supported by effective interventions resulted in good improvement in cough/choking during feeding, vomiting, swallowing and restricted temporomandibular joint movements. It was reassuring to observe that there was improvement in OMD in 13.3% cases with normal feeding score, 54.8% cases with marginal and 25% cases with inadequate feeding skill score. Out of 33 cases who were taking only liquid diet at the time of enrolment, 21 (63.6%) were shifted to liquid plus semi solid diet, 18/45 (40%) who were initially on liquid plus semi solid diet moved on to liquid plus semi solid plus solid diet. Forty per cent of cases had improvement in nutritional status. Table III - Relationship of Type of Cerebral Palsy and OMD with Nutritional Status
Discussion Nutritional deprivation in children with cerebral palsy is summation of several factors which directly or indirectly result in reduced intake. Feeding problems are not as frequently recognized in these children and even if recognized are tackled in the same mariner as for other chronic diseases with more easily recognized nutrition-related growth failure(11). In order to optimally utilize the impaired feeding potential in these children, early identification of children at nutritional risk is necessary and requires regular assessment of feeding and nutritional status and appropriate nutritional rehabilitation(12). Feeding problems observed in our patients included sucking and swallowing problems, inability to self feed, inadequate feeding skills, regurgitation, coughing and choking during feeding, recurrent chest infections, oral motor dysfunction, vomiting, cry/extensor dystonia during feeding, drooling, hypertonic tongue and inadequate tongue lateralization. Feeding problems were present in all our children. Prevalence of feeding problems was high in our study in contrast to another report(13) which may be attributed to poor developmental age of our cases. Feeding problems were further compounded by unawareness of parents about disease and associated problems. There was a significant contrast between parental perception about feeding problems as compared to feeding problems actually identified in these children. This issue has not been discussed in depth by other studies. The main reasons for lack of awareness were illiteracy, misconception about disease and associated problems. It appears that the psychological impact of having a child with severe chronic neurological disease is so deep that parents do not appreciate the feeding problems to the extent they should. OMD was diagnosed in each category of cerebral palsy and in all the enrolled cases. Spastic quadriplegics had severe OMD similar to another study(13), but in contrast, in our study hypotonic patients also had poor OMD. Diplegic and hemiplegic patients had only mild OMD. The persistence of any ‘normal’ oral reflex beyond the time of its expected integration may be an indication of oral motor delay or disorder(6). We diagnosed, OMD and feeding skills by observa-tion of feeding sessions but video recording of structured feeding sessions has been found to be a good method for diagnosing presence of OMD(14). In depth interview of the parents revealed that instead of being an enjoyable family event meals were stressful and time consuming for these children and those caring for them. Feeding took parents four to six hours a day and it was punctuated by repeated spillage of food, bouts of cough, choking or regurgitation. Duration of feeding sessions was long in our experience (mean 31.5 minutes, range 10-60 minutes) which is consistent with other reports(15) but unlike another study(13) our children with marginal and inadequate feeding skill score had longer duration of feeding sessions than children with normal feeding skill score. It is not known what is the best type of food to offer to children with CP who have eating difficulty. It has been recommended that children with CP who have poor oral motor function should be offered food that they can eat with least frustration or distress(8). In our study, main food of CP patients was of liquid and semisolid consistency in 45% cases. Severity of OMD had significant effect on the consistency of food consumed by cerebral palsy patients. Poor OMD in CP children prompted the parents to prefer liquid diet to feed them. Extensor dystonia, hypotonia, seizure and dyskinesis greatly interfere with feeding(1). Children with seizures were significantly associated with more feeding problems in comparison to children without seizures. Hypertonia, stiffness of temporo-mandibular joint during and after an episode of seizures and post ictal sleep/ parental fear to feed them may also contribute to reduction in total caloric intake of these children. Parents of CP patients overestimated the nutrition of their children. Anthropometric indicators were significantly reduced in SQCP, similar to other studies(11,12). Etiologies of undernutrition in different studies were inadequate caloric intake, OMD and problems associated with CP(1). Measures of energy intake adjusted for weight changes represent ‘a valid method to estimate energy requirement in a group of individuals with severe CNS impairment(16). Caloric intake of CP patients was significant lower than controls in our study. Spastic quadreplegics and hypotonic patients had poor nutritional status, whereas Dahl et al.(17) found poor nutritional status in dystonic form. Similar to the study by Krick and Duyn(16), OMD had significant negative effect on nutrition in our cases. Thirty per cent of parents of CP patients believed that the feeding problems of their children could not be cured. But parents who were optimistic gave equal emphasis to exercise, exercise plus medicines and medicines alone. Nutritional rehabilitation attempted with specific interventions, change in consistency of food and involvement of parents and elder sibs in the management of children with CP was found to be quite rewarding since improvement was seen in cough/choking during feeding, vomiting, swallowing, restricted temporomandibular joint movement, chewing problems, recurrent chest infection, cry/extensor dystonia during feeding and regurgitation. In a child with multiple feeding difficulties the first problem to show improvement was cough/choking during feeding followed by improvement in swallowing and chewing. Significant improvement was seen in spoon feeding, chewing and swallowing but there were no significant changes in drinking skills(18). Improvement in OMD and other feeding problems made it possible to change the consistency of the food offered to them and resulted in increased caloric intake. Nutritional status improved considerably in 40% of cases and mainly resulted from improvement in feeding problems and OMD. Thus, identification and nutritional rehabilitation in these children was quite rewarding since these efforts have a great potential to improve their weight, subcutaneous energy stores, muscle mass, decreased irritability, healing of decubitus ulcers and improvement in peripheral circulation and immune system(19). Contributors: AKP coordinated the study (design and analysis) and drafted the paper, he will act as the guarantor for the paper. AG participated in the data collection, analysis and drafting the paper. SA contri-buted in neurological assessment of the cases. BA participated in data collection and rehabilitation of the patients. VKA helped in data analysis and drafting the paper.
Funding: None.
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