In this last study a nutritional intervention was undertaken; in the well-nourished group, the nutritional intervention was compared and followed. The multiply handicapped children had spastic tetraplegia (75%), epilepsy (84%), disturbed chewing (84%), regurgitation (50%) and choking (50%). The nutritional intervention consisted more in a team approach than in taking measures specifically directed to individual needs. Milk products were maximized to 750 ml a day and were taken with meals. In between snacks, the emphasis was more on fruit and vegetable mixtures and fruit mixtures. Fiber was added to cereals in the order of 30 g a day. Those who refused bread were given porridge based on a mixture of tube feeding powder (1kcal/ml), water and cereals. Special considerations to drinks were given: drinks were enriched with nutritional supplements. If necessary, tube feeding was added; 30% needed additional tube feeding.
This multidisciplinary approach and intervention lasted for 1 year and resulted in an increase of energy intake from 1349 kcal to 1598 kcal. The normally fed group changed from 1673 to 1683 kcal/day. Protein intake increased from 50 to 67 g and in the normally fed from 73 to 79 g/day. Carbohydrates increased in the undernourished from 170 to 212 g/day, and in the well nourished from 189 to 208 g/day. Fat increased from 52 to 54 g/day, in the well nourished it declined from 70 to 60 g/day. Linoleic acid went from 6 to 10 g/day, and in the well nourished 8 to 9 g/day. Fiber increased from 11 to 26 g/day and in the well nourished from 18 to 31 g/day. Water increased from 1077 to 1167 ml/day, and in the well nourished from 1401 to 1437 ml/day. After 1 year, the BMI improved from 18.8 to 19.3 kg/m2, triceps skin fold did not change, 0.98 to 1.03 cm, and the upper arm muscle circumference increased from 19 to 20.1 cm. Nutritional deficiencies (in percentage less than two-thirds of the daily recommended allowance) declined in vitamin B6 of 32 to 2%, nicotinic acid of 77 to 34%, vitamin C of 18 to 0%, sodium of 61 to 39%, and iron of 84 to 11%). The normalization of fiber intake reduced the necessity for stimulant suppositories for constipation by 56%.
Thus, nutritional intervention by a team approach seems to be beneficial in the majority, showing that appropriate feeding is helpful in overcoming nutritional problems. When tube feeding is necessary for longer periods, percutaneous endoscopic gastrostomy (PEG) has become a fashionable approach. In a 1.5-year prospective study, the change of nasogastric tube feeding to PEG tube feeding had an unsuspected side-effect in reducing nutritional problems, vomiting and respiratory infections between 30 and 40%.21 Also, well-being was improved in 40%. Interestingly, vomiting, airway infections and also irritability diminished. The standard deviation score of weight for height improved from -3.8 to -1.8. An easier access via PEG tube feeding, as compared to the irritating tube in the nose, resulted in better daily nutrient intake than more traditional nasogastric tube feeding.
These observations are in keeping with studies in energy expenditure of children or adolescents with severe disabilities. In a study in children with cerebral palsy,19 Stallings et al measured basic energy expenditure by indirect calorimetry and total energy expenditure by the doubly labeled water method. Physical activity including chronic spasticity of children with spastic quadriplegic cerebral palsy was estimated from the ratio of total energy expenditure to resting energy expenditure. Control children were those children with adequate weight, adequate fat-free mass and fat mass, as well as children with a lower fat-free mass and a lower body fat mass. Measurements were made by triceps skin folds and arm circumference. An interesting observation in children with severe quadriplegic cerebral palsy who were expected to have extra energy demands for involuntary muscular work showed lower total energy expenditure and lower resting energy expenditure compared to well-nourished children with this handicap and to controls. Resting energy expenditure and activity energy expenditure (estimated as total minus resting energy expenditure) were both diminished, thus not supporting the commonly held view that spastic children expend more energy because of their involuntary movements. In this study, reported dietary intake was compared to total energy expenditure measured by the doubly labeled water method. With this method, body weight before and after the test period measures exactly the number of calories expended and this can be compared with the intake. It was thus shown that the dietary intake reported was overestimated by 50% compared to the actual intake measured exactly by the total energy expenditure. This finding underlines the problems that these children face with feedings: meal duration is longer, frequently exceeding 45 min, exceeding the tolerance attention span of the patient and the available time of the caregiver. Oral motor abnormalities of varying degrees are observed in these patients. They often contribute to the symptoms and may lead to food loss. In all these children with growth failure and abnormal body composition, it was shown that the resting energy expenditure adjusted for fat-free mass was lower in the poorly nourished than in the adequately nourished group of children with severe spasticity. This suggested a basic metabolic response or adaptation to the poorly nourished condition.
Gastroesophageal reflux (GER) symptoms such as vomiting, rumination and regurgitations are found in 20-30% of the intellectually disabled popula tion. GER-related iron deficiency anemia and hematemesis are noted in 10-20% of patients. In the Netherlands and Belgium in a large cohort of more then 1500 patients, a randomly selected intellectually disabled population was tested with pH-metry during 24 h. A pathological pH test (defined as a duration of a pH of <4 for more than 4% of the measured time) was seen in 48% of cases.22 These patients were subjected to endoscopy and reflux esophagitis was found in 96%: 14% had grade I esophagitis, 33% had grade II, 39% had grade III and 13% had grade IV (Savary Miller classification). Barrett's esophagus was found in 14% and peptic strictures in 4% of cases. This study was repeated for the group under the age of 14, and similar findings were seen. In fact, GER disease was found even in the absence of overt symptomatology.
A possible explanation for the high prevalence of GER disease is the increased prevalence of hiatal hernia, found in 50% of elderly patients and 76% of intellectually disabled children. In the Dutch study, 46% had hiatal hernia and no relationship with rumination. There was some association with cerebral palsy, use of anticonvulsant drugs, scolio-sis and restlessness. Anticholinergics and sedatives do decrease the lower esophageal sphincter pressure, which in turn might trigger more episodes of GER. Interestingly, dental erosions were seen more frequently in individuals with a pH lower than 4 for more than 6.3% of the measured time and with an IQ of less than 35.
For the whole Dutch and Belgian group, the standardized morbidity ratio for esophageal carcinoma was 2.9; there is thus an increased risk of developing esophageal cancer, probably related to chronic GER disease and Barrett's dysplasia. For the patients who underwent anti-reflux surgery, this was found to be effective in 38%, while no symptom relief was seen in the remaining 62%. H2-blockers were effective in 60% of patients and proton pump inhibitors were effective in 69% of patients. Surgery for the neurologically impaired children is known to have a significantly higher incidence of major complications than in intellectually normal patients with GER. It is in fact, a common notion that re-operation and relapses of GER are frequent. The mortality rate was 8.8-9.4%. The postoperative complication rate was 12-15%. In this large Dutch and Belgian cohort,
omeprazole was used in a dose of 40 mg once daily and was effective in 88% independently of the severity of the esophagitis. Ten per cent of patients had symptomatic relapse after decreasing the dose to 20 mg daily as maintenance treatment; however, all these patients became symptom-free again after increasing the dose to 40 mg daily. Endoscopically, the esophagus was healed at the end of the study.23 The occasional patient may need up to 60 mg of omeprazole: Hassal et al found that a dose of 1-4 mg/kg per day was needed in a variety of esophagitis patients with hiatal hernia, mental retardation, repaired esophageal atresia and even in apparently healthy children with esophagitis.24 Keeping these children on a maintenance of omeprazole 20 mg daily resulted in a marked improvement of persistent vomiting, hematemesis, regurgitation, food refusal and iron deficiency anemia. The prevalence of Helicobacter pylori infections was also tested and found to be around 50% of children, and up to 83% in adults. No clear correlation (either direct or inverse) between H. pylori infection and GER symptoms was found.
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