There is no known cure for cerebral palsy. In spite of this, there’s much that can be done both for the children diagnosed with this incurable disease and for their parents, says physiotherapist Gopi Kitnasamy. As the father of a 12-year-old with cerebral palsy (CP), Mr. Kitnasamy is intensely aware of the struggles parents face in finding medical and academic support for their children. His solution is the Dream Centre – created by the Cerebral Palsy Lanka Foundation – the centre opened last week offers not only treatment and therapy but educational curriculum as well.
Consultant Paediatrician, Dr. Siromi Panditharatne is on the board of directors at the foundation. She explains that CP first develops when a foetus is still in the womb, during birth or shortly thereafter. The term cerebral palsy itself is used to cover a range of disorders that affects muscle tone, movement, and motor skills. Associated problems can include vision, hearing, and speech problems, and learning disabilities. The disorders appear in the first few years of life, usually before the age of three.
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| Gopi Kitnasamy at the opening of the Dream Centre and below a special classroom.
Pix by Mangala Weerasekera |
While the exact causes of CP remain unknown, the roots of the problem can often be found in the flawed development of the parts of the brain or even in outright brain damage. This can be caused by infections, injuries and even maternal health problems. In infancy, brain damage caused by anything from lead poisoning to bacterial meningitis or malnutrition can lead to CP. Premature underweight babies are also at higher risk.
There are three types of CP. The first known as Spastic CP causes stiffness and movement difficulties. The second, Athetoid CP leads to involuntary and uncontrolled movements and the third, Ataxic CP causes a disturbed sense of balance and depth perception. Whatever the cause, the disruption of nerve signals between the brain and the muscles can make it difficult for someone with CP to sit, move around or manage simple tasks like writing, bathing or feeding themselves.
Dr. Panditharatne explains that many babies with cerebral palsy simply miss essential developmental milestones or lag behind the majority of their peers. They are often slow to master the basics of rolling over, sitting, crawling or walking. Depending on the damage and the area in which it has occurred, the patient’s problems can range from minor to severe. While CP does not usually get worse with time, it can still represent a great challenge to a child and his or her family, especially when it is complicated by other medical conditions, including seizure disorders or mental impairment.
The disease can leave its victims disabled to very different degrees – some so seriously that they are immobile or unable to speak at all. Still, judging their intellectual capacity based on their physical ability is often misleading. In the last decade, research has shown that children with cerebral palsy can possess near normal or even above average IQs, says Dr. Panditharatne.
These findings have made it essential that such children are given a chance to learn instead of simply consigned to institutions. The Dream Centre hopes to provide a range of specialized treatments and therapies to help children become more active intellectually and physically and more interactive with their families and society at large.
Treatment typically includes medicines, braces, and physical, occupational and speech therapy. Mr. Kitnasamy, who is himself a Certified Pediatric Bobath Therapist says that it is one of the therapies that will be introduced at the centre. In this approach to the management of children with CP, the main goal is to increase a child’s mobility and move about as normally as possible. Abnormal postures and movements are changed or adapted so that the child functions better in the context of his or her environment.
Another therapy with similar intentions is known simply as ‘Suit Therapy'. In it, the child is put into a special suit whose special design helps children control their movements better. Described as a “breathable dynamic soft orthosis,” the suit consists of a vest, shorts, knee pads, shoe attachments and a hat. Wearing the suit, the child is put through the paces of functional activities such as rolling, sitting, kneeling, standing and walking.
Also available at the centre will be the treatment known as Hippotherapy. Mr. Kitnasamy says they will be using a mechanical substitute for a horse – the animal whose “multi-dimensional movements” can help riders develop essential skills like gait training, balance, postural/core control, strengthening and a range of motion goals. According to the team, sensory processing via hippotherapy simultaneously addresses the vestibular, proprioceptive, tactile, visual and auditory systems. Another approach, known as Sensory Integration Therapy is a type of occupational therapy where the child is placed in a room specifically designed to stimulate and challenge all of the senses. During the session, the therapist works closely with the child to encourage movement within the room.
Yet another technique – that known as the Whole Body Vibration therapy - is designed to address a particular vulnerability, that of CP children to low bone mass accumulation due to decreased mobility and weight-bearing. While therapists have most often resorted to physical therapies to rectify the situation, it is time and labour intensive work. At the end of it, there is no guarantee that it would have been adequate. The whole body vibration has been adopted as an alternative method for stimulating increases in bone mass and improvements in muscle.
In order to help children in the classroom, the Dream Centre intends to embrace Conductive Education. This unique approach is designed to help children and adults who have motor disorders that would normally make it impossible for them to function in a regular classroom. It is also worth noting that these same disorders, some of which are congenital, may have been holding a child back from birth, preventing their access to stimulating, learning experiences. This means they cannot be expected to always perform on the same level as their peer group. Unlike the other techniques listed, Conductive Education is a learning process not a treatment or therapy. The students are active participants in their own studies.
The Dream Centre’s work is only just beginning says Mr. Kitnasamy. Today, the Centre is located in a four- room house in Wattala, but he imagines a time when there will be multiple centres across the island. Already, they have begun training teachers to work with students who have CP, and they say that collaborations with International organisations and Indian groups such as the Spastics Society of Karnataka, will provide more learning opportunities for local teachers and caregivers.
One of the Foundation’s key goals is also to create a comprehensive database of CP children and persons, which they hope to break down on a district by district level. Though estimates place the number of children with CP in Sri Lanka at 40,000, Mr. Kitnasamy says that there could be three times that number – meaning a vast majority of cases remain undiagnosed in Sri Lanka. Raising awareness of the disease, then, is an essential first step to rectifying the situation. For the Cerebral Palsy Lanka Foundation, the first of its kind on the island, this has become one of many goals to pursue.
The Dream Centre is at Captain Kelum Rajapakse Mawatha, Wattala. The CP helpline number is: 0117226326. |
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