|Year : 2015 | Volume
| Issue : 1 | Page : 49-53
Participation restrictions in a teenager with down syndrome: A nine year follow up case study
Asha Chitnis1, Reena Mody1, Gajanan Vithalrao Bhalerao2, Sujata Noronha1, Madhavi Kelapure3, Kruti Shah1
1 Vedanta Paediatric Centre, Mumbai, Maharashtra, India
2 Sancheti Institute of Physiotherapy, Pune, Maharashtra, India
3 Consultant in Paediatric Physiotherapy, Deenanath Mangeshkar Hospital, Pune, Maharashtra, India
|Date of Web Publication||21-Apr-2015|
Vedanta Paediatric Centre, Mumbai, Maharashtra
Source of Support: None, Conflict of Interest: None
This is a case report of Aadyant, a child with Down syndrome,  across his life so far from age 8-17 years. Although Aadyant (name changed) had a sound immediate postnatal period, he was diagnosed with Down syndrome at birth. He suffered from convulsions at the age of 6 months. He had subluxation of the right hip joint.
Sensory motor cognitive developmental therapies with perseverance and participation by the family do improve the condition of the person.
Keywords: Down syndrome, participation, restrictions therapy
|How to cite this article:|
Chitnis A, Mody R, Bhalerao GV, Noronha S, Kelapure M, Shah K. Participation restrictions in a teenager with down syndrome: A nine year follow up case study. Indian J Cereb Palsy 2015;1:49-53
|How to cite this URL:|
Chitnis A, Mody R, Bhalerao GV, Noronha S, Kelapure M, Shah K. Participation restrictions in a teenager with down syndrome: A nine year follow up case study. Indian J Cereb Palsy [serial online] 2015 [cited 2020 Jun 1];1:49-53. Available from: http://www.ijcpjournal.org/text.asp?2015/1/1/49/153579
| Abhyant at the Age of Eight|| |
Abhyant was brought to our therapy center by his parents with the chief concerns of inability to sit, stand, and walk. He would try to assume sitting from a lying down position with assistance of a caregiver. When assisted to sit (against a wall or furniture), he could maintain sitting for a few minutes under supervision. For mobility he had to be carried manually or in a wheelchair.
He was completely dependent on parents for feeding, bathing, and toileting.
Abhyant demonstrated poor ability to reach for and grasp objects with either of his upper extremities. Bi-manual and bilateral tasks were also extremely difficult. He also disliked the sensation of anything in his hands. Abhyant had difficulty eating solid foods and he was fed purιed food. He had very poor verbal as well as non-verbal communication skills. He did not participate in any kind of symbolic or imitative play.
Abhyant showed a decreased ability to regulate his physiological arousal in the environment and great difficulty modulating himself to task and place. Abhyant was usually dishinibitory and showed clapping, mouthing, rocking, and at home, screaming as self stimulating behavior. He had poor ability to visually focus and orient himself to the environment. His hearing was found to be within normal limits. He showed poor somatosensory, kinaesthetic, and proprioceptive awareness throughout his body. Abhyant's general understanding was poor for his age, and his cognitive abilities were challenged.
In the neuromuscular system, he had difficulty in recruiting postural muscle activity. Abhyant could initiate postural muscle activity in sitting better than he could in standing but had difficulty sustaining it. His alignment and ability to sustain posture was poor in vertical postures. He could perform concentric and to some extent isometric muscle work, but he had extreme difficulty performing eccentric muscle work, with the trunk more affected than the extremities, and the lower extremities more affected than the upper extremities. Abhyant demonstrated decreased co-activation of abdominal and back extensors, thus making it hard to assume and maintain vertical postures. As for the musculoskeletal system, he had poor strength generally in all postural muscles of the body.
As per the scales of evaluation, Abhyant scored 13.59% on the Gross Motor Function Measure (GMFM). He was on Gross Motor Functional Classification System (GMFCS)  Level V, as he was transported in a manual wheelchair. His Functional Mobility Scale (FMS) scores were 1, N, N; as he could barely stand for transfers and could not walk when supported for a distance of 50 and 500 meters respectively.
Abhyant had a family that was financially and emotionally strong and devoted to his progress. In spite of his immense problems, his hearing was normal, and he did not have additional associated health problems such as heart defects. His parents wanted him to sit on his own and at least walk inside the house with minimal support. Unfortunately, due to his physical impairments, cognitive and social development, were not given a major priority by the family.
| Key Components of Abhyant's Intervention Plan|| |
His therapist followed a specific treatment program based on Neurodevelopmental Treatment Approach.  This approach is directed not only towards physical independence, but it also targets child's emotional, social, sensory, perceptual aspects so that he or she becomes an active member of the society and can fulfil his duties like any other individual. Treatment by the approach does not stop at achieving physical improvement; but assures that the child is able to use the same to accomplish his age-appropriate roles and occupational performance.  He also participated in a speech therapy program from the age of one year on and off until about age seven.
Strategies were designed to organize and modulate the behavioural responses in his environment and were targeted towards specific impairments of the sensory, neuromuscular, and musculoskeletal systems to improve his postural control, strength, and graded mid-range control using functional activities. He had one hour of therapy five times a week. During his therapy intervention, specific home activities were given to enhance motor learning.
| Working on Abhyant's Regulatory System|| |
At the beginning of each treatment session, an optimum arousal was pre-requisite for Abhyant to follow and actively perform all further activities. When he came in for each session, he showed self- stimulating behavior (clapping, screaming, or rocking) with poor attention to activities. We started with vestibular and proprioceptive input. This was done by using suspended equipment such as the platform and bolster swing. We also used vestibular and textured balls to give him whole body compression. Wrapping him in textured mats and applying vibration also helped to calm him down. These activities also allowed him to slowly accept therapeutic input. They were combined with visual and auditory tracking and focusing using appropriate toys. This combination assisted him with regulation of his arousal and improved attention, which in turn helped to engage him in activity, follow commands, and achieve better postural muscle sustaining during activity.
| Improving Abhyant's Gross Motor Function|| |
After working on his arousal, the next step was to improve his gross motor function. He then worked on a larger ball to address his system impairments and his posture and movement goals. On the ball, we worked for sustained isometric contractions of the trunk extensors to improve postural control. We worked for proximal stability by asking him to push bolsters in front of him to facilitate sustained isometric contractions of the shoulder girdle muscles and activation of hand muscles to work for grip later. In prone, he was given elastic bands to pull. From prone, he was placed in sitting on the ball, and we worked for sustained sitting with hands pressed on the ball and reaching in different directions to incorporate rotation. The movement of the ball activated his vestibular system and allowed him to work for balance as he learned to anticipate and correct his posture accordingly [Figure 1].
Abhyant worked on a bolster swing that was slightly tilted to improve alignment and to sustain his postural system. We worked for forward weight shifts and loading of the feet to initiate standing as he achieved sustained co-activation of the trunk muscles and concentric work in the lower limbs. Stand to sit facilitated eccentric control of the gluteals and quadriceps. Sitting or standing with hands holding the chain in front of the bolster encouraged sustained grasp and symmetrical posture. To assist him to transition from the floor independently holding on to furniture, we incorporated the above movements, simulated in the clinic by using an appropriate height bench. The transitions required frontal and transverse plane movements with isometric and eccentric contractions of the trunk and lower extremities as he moved stand to floor, and concentric intra-limb dissociation, which is necessary to further his gross motor skill of ascending and descending stairs.
In standing, we worked for sustained postural control and balance on moving support surfaces, incorporating heightened vestibular and tactile system input. We worked for step standing with one leg on a tilt board or bolster to facilitate inter- and intra-limb dissociation and reach forward to ascend the tilt board. We later incorporated this movement into stair climbing. Placing a squeaky toy underneath his feet gave him auditory feedback when he pressed his leg down. We worked in standing, asking him to place a foot on specific colors of a mat to facilitate stance and swing phase of gait. We facilitated kicking a ball or crossing obstacles, helping to elicit single limb stance, which is required for assisting in lower body dressing [Figure 2].
| Working Simultaneously on the Motor and Sensory Systems|| |
At every point during the intervention, meaningful sensory information was a part of the strategies to improve his motor function. His visual, auditory, tactile, and vestibular-proprioceptive systems were engaged as appropriate. As he achieved sitting, we challenged him by having him sit on movable surfaces, that is a platform swing with feet on a textured surface for tactile input with his feet forming part of his base of support (BOS). We engaged him in activities such as tracking light and sound objects, teaching him directionality, and we practiced balancing to allow him to develop anticipatory balance. Activities such as sit to stand were done on various heights and textured surfaces so that he had to use his muscles in different ranges and perceive height, depth, and texture [Figure 3].
| Progressing Towards Mobility Training|| |
Mobility involved working on the movement system as well as posture. First, we assisted him to achieve antigravity control of his posture. That assisted him to achieve vertical postures such as supine to sit. He also worked on mid-range and end range activities to improve eccentric control of the trunk and lower extremities. Activities such as one leg standing, stepping up and down on different heights, and partial squats were very helpful. Assisted walking on slant surfaces such as wedges, walking through a course of obstacles, and climbing a series of steps with varying heights enhanced the strength and control of his lower extremities and also facilitated use of his vision for orientation and height and depth perception. Practice through repetition was essential to ensure motor learning.
| Fine Motor Function and Cognitive-Perceptual Training|| |
As Abhyant improved with his gross motor function, we designed tabletop activities for him to encourage reach and grasp. We used textured grains, theraputty, elastic bands, and objects such as spoons, glasses, and plates to enhance his fine motor function.
Abhyant is a visual learner and enjoyed playing with flash cards, colours, and pegboards. Picture flash cards and action cards were used to improve his visual memory and sequencing. This also helped teach him communication skills, although he needed assistance to point with his fingers. As Abhyant understood function. Communication training: Saying 'yes' colours, we used colour coding - green for yes and red for no to teach him to express his likes and dislikes [Figure 4].
While still at the age of eight, as his physical activity improved, he started standing with support. His orthopaedic surgeon felt this was the time to re-locate his right hip surgically without fear of the femoral head subluxing again. He had corrective surgery at eight years and plate removal at the age of nine.
Abhyant at present
Today Abhyant is 17 years of age. He is a sweet teenager who greets everyone he is familiar with. Occasionally, he exhibits bouts of shouting or screaming when he is excited or angry. He can attain sitting from supine independently, can maintain sitting and can also raise himself to standing by pushing on furniture or floor. Abhyant can walk independently in his house from one room to another but needs supervision because of poor directionality.  Abhyant can walk on level surfaces in the home environment but cannot cross or manoeuvre around furniture, objects, or people in his way. In the community, he needs one hand held for walking. He needs minimal assistance to get in and out of a car and to ascend stairs but needs maximum manual assistance to descend stairs because of poor eccentric control and depth perception.
As for fine motor functions, Abhyant can reach for objects with minimum help (he requires manual assistance to move his hand in space), and he has poor mass grasp. Although he needs help for feeding, he takes part in the process by trying to hold a thick spoon and taking his hand up to his mouth. He has also initiated taking part in ADLs like dressing, undressing, bathing, and toileting. He interacts with or greets people he knows well. Abhyant can identify known flash cards. He can scan alphabets, numbers, and cards. He shows good visual memory and sequencing skills. For example, Abhyant can recall phone numbers and spelling of objects once shown.
On standardized scales of functioning, Abhyant scores 42.89% on the GMFM and is on GMFCS3 Level III. On the FMS, he scores 5, 5, 5 (with breaks); as he can walk distances of 5, 50 and 500 meters with help of another person and needs a rail for stairs. Thus, Abhyant shows considerable improvement in his function and mobility.
Schooling and social participation
Abhyant attended a special school for a few years but had to discontinue due to difficulties of transportation, adjustment of his schedules to school timing etc., His social development and interaction with peer groups were also affected.
Cultural barriers and contextual factors
Over a period of 9 years, Abhyant has shown improvement in his functional abilities and mobility. He still has some limitations of participation in society. He has difficulty sitting on the floor for family functions, eating, prayers. Toilets are not accessible and designed for people with disabilities in the community. Transportation facilities are not accessible for people with disabilities. Public places like shopping malls and restaurants have poor accessibility, lacking wheelchair ramps and separate elevators with poor infrastructure and space. This situation brings a big challenge for Abhyant to be able to perform his duties like any other citizen.
Abhyant still has a long way to go and we continue our efforts to treat him to:
- Improve basic life skills such as eating with a spoon and holding a cup to drink water and basic dressing/undressing for toileting
- Be able to communicate his basic needs using gestures, pointing, or using an iPad
- Ascend and descend stairs with minimal assistance and assist in car transfers.
| Summary|| |
Abhyant, through a span of 9 years, has gained functional abilities. Nevertheless, he is still dependent on caregivers for certain tasks at home as well as for outdoor ambulation. The focus of his abilities now needs to be participation in home and community to the best of his abilities. We are working towards current functional outcomes with the ultimate goal of improving the quality of life in his adulthood?
| References|| |
McClure HM, Belden KH, Pieper WA, Jacobson CB. Autosomal trisomy in a chimpanzee: Resemblance to Down's syndrome. Science 1969;165:1010-2.
Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997;39:214-23.
Case-Smith J, Frolek Clark GJ, Schlabach TL. Systematic review of interventions used in occupational therapy to promote motor performance for children ages birth-5 years. Am J Occup Ther 2013;67:413-24.
Bull MJ. Committee on genetics. Health supervision for children with Down syndrome. Pediatrics 2011;128:393-406.
[Figure 1], [Figure 2], [Figure 3], [Figure 4]