Guided eating or feeding: three girls with Rett syndrome
children; Rehabilitation; occupational therapy; skills; Activity; dyspraxia; engagement; hand function; hand splints; hand use; involvement; movements; participation; stereotyped hand movements; tone and motor problems; Rett syndrome; psychological intervention; guided eating; being fed
Rett syndrome (RTT) considerably limits participation in daily activities but food and mealtimes are most often motivating activities for persons with RTT. The aim of this study was to investigate whether there is a difference in participation during meals when the persons eating do so through guided eating compared with being fed. Three girls with classic RTT participated in a study inspired by single-subject design. Investigation was performed during two meals at which the girls were fed and during a seven- to eight-week period when guided eating took place. Video analysis and registration forms were used, investigating (1) coordination between opening of the mouth and spoon movement, (2) signs of involvement during the meal, and (3) cooperation in arm movements during guided eating. Guided eating led to improved coordination between opening of the mouth and spoon movement, resulting in opening of the mouth before the spoon arrived, for all of the girls. Signs of involvement changed in two of the girls. According to the guiders, they were able to feel cooperation in arm movements during the different food intake sequences in all three girls. These results indicate that guided eating improved involvement and participation in the eating process in these girls.
Qvarfordt I; Engerstrom I W; Eliasson A C
Scandinavian Journal of Occupational Therapy
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/11038120802326214" target="_blank" rel="noreferrer noopener">10.1080/11038120802326214</a>
Characterisation of breathing and associated central autonomic dysfunction in the Rett disorder
Pediatrics; hyperventilation; angiotensin-ii; autonomic system; brain stem; component; dysautonomia; immaturity; neurons; nucleus-tractus-solitarii; protein-2; real-time; reflexes; Rett disorder; vagal tone; breathing difficulties; Rett syndrome; trajectory; characteristics; abnormal respiratory rhythm
Aim-To investigate breathing rhythm and brain stem autonomic control in patients with Rett disorder. Setting-Two university teaching hospitals in the United Kingdom and the Rett Centre, Sweden. Patients-56 female patients with Rett disorder, aged 2-35 years; 11 controls aged 5-28 years. Design-One hour recordings of breathing movement, blood pressure, ECG R-R interval, heart rate, transcutaneous blood gases, cardiac vagal tone, and cardiac sensitivity to baroreflex measured on-line with synchronous EEG and video. Breathing rhythms were analysed in 47 cases. Results-Respiratory rhythm was normal during sleep and abnormal in the waking state. Forced and apneustic breathing were prominent among 5-10 year olds, and Valsalva breathing in the over 18 year olds, who were also most likely to breathe normally. Inadequate breathing peaked among 10-18 year olds. Inadequate and exaggerated breathing was associated with vacant spells. Resting cardiac vagal tone and cardiac sensitivity to baroreflex were reduced. Conclusions-Labile respiratory rhythms and poor integrative inhibition in Rett disorder suggest brain immaturity. Linking this to an early monoaminergic defect suggests possible targets for the MECP2 gene in clinical intervention. Exaggerated and inadequate autonomic responses may contribute to sudden death.
Julu P O O; Kerr A M; Apartopoulos F; Al-Rawas S; Engerstrom I W; Engerstrom L; Jamal G A; Hansen S
Archives of Disease in Childhood
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/adc.85.1.29" target="_blank" rel="noreferrer noopener">10.1136/adc.85.1.29</a>