Cerebral Palsy is one of the most traumatic neurological conditions that affect a young child. It affects both the child and the parents who, unable to help their children can only watch with agony as the condition advances. Yet it need not always be the case, since new advances in detecting these cases early offer a promise for better outcomes, says Chairman of the country’s first and only Centre for Cerebral Palsy, who has just launched an all under one roof package of services for such children and their parents.
With World CP Day just over, Chartered Physiotherapist, Dr Gopi Kitnasamy who heads a leading physiotherapy unit in a hospital in Kollupitiya, discusses these new methods and the need for raising awareness among parents of an estimated 80,000 children with CP in Sri Lanka and the public in general, on a little known neurological condition.
 Dr Gopi Kitnasamy |
Excerpts of interview with the
Sunday Observer.
Q: In recent years Cerebral Palsy (CP) cases have spiked in Sri Lanka. What is the estimated prevalence rate at present? How did you come up with this figure? Was there a national survey? When?
A. We believe, the prevalence of CP cases has increased in Sri Lanka in recent years because the families of affected children have started to bring their children into the community and the public are becoming aware of this condition. Since the launch of Cerebral Palsy Lanka Foundation (CPLF) in 2011, we have spearheaded several initiatives, such as, Sri Lanka’s first ever National CP Awareness Week, Mobile CP Information Services (via Mobitel – 2223), World First Mobile CP App, Around the Pearl (a wheelchair fundraising initiative in partner with Wheels for Wheels Foundation), 1,000 Wheelchair Project, Dental & Vision Screening programs and several media programs. These initiatives increased awareness about CP among the public and created opportunities to change the housebound situation of these children, while motivating their families to help them to be part of society.
According to data available, the estimated number of CP cases is around 40,000 in Sri Lanka. But if we go by the ratio of 4:1,000, the numbers will be more than 80,000 (for 22 million population). Still, this is only an estimate. We are working on a National survey and a Sri Lankan CP Register, and will launch this project soon. It will give the exact prevalence data in each district of Sri Lanka. We already have more than 2,000 registered in our database.
Q: Do the present figures show an increase in the incidence of CP in general islandwide? Or in certain areas?
A. The figures quoted may not reflect an increase in the incidence of CP as such. But, the numbers are growing because more cases are being reported and registered in our data base. To answer your question on regions that have the highest incidence, in the recent wheelchair and assessment camps conducted by CPLF in 13 districts, we have seen a high number of children from the Western Province. But here again we need more data and studies to arrive at the exact rates.
Q: Age-wise and gender wise, who are most at risk of developing this condition?
A. CP is very common among boys and the high risk babies can be identified as early as 5 months.
Q: Since children are most at risk, do you think there is sufficient awareness on the part of parents and guardians about it? Many still don’t know if it is a disease of condition. Can you explain what CP is and how it is caused?
A. Yes, there is a lack of awareness about this condition and CPLF has been organizing several awareness programs throughout the country. First, we need people to understand that CP is NOT a disease. It is a non-progressive (the brain damage doesn’t get worse) neurological disorder due to the damage in the motor control area (the area in the brain that controls the movements and posture) of the developing brain.
Q :What causes this condition?
A. Reasons could be many and could occur before, during or after birth. Let me give examples: Before birth - from infections from the mother, damage to the placenta, bleeding, smoking/drinking - mother, mother’s height (less than 5 feet), weight (underweight or excess), mother’s medical conditions, previous miscarriages, multiple births (twins/triplets), abnormal brain formation, lack of oxygen or blood supply to the brain, during birth - umbilical cord coiling, breech/vacuum/suction/forceps delivery, other complications during delivery, after birth - infections, damage to the brain (fall/accidents/injuries), tumour/cyst, stroke are the risk factors for developing CP.
Q: Symptoms to look for?
A. Signs and symptoms vary. Movement and coordination problems associated with cerebral palsy may include:
Variations in muscle tone, e.g. too stiff or too floppy,
Lack of muscle coordination (ataxia)
Tremors or involuntary movements
Delays in reaching motor skills milestones, such as holding the head, pushing up on arms, sitting up or crawling.
Favouring one side of the body, such as reaching with only one hand or dragging a leg while crawling.
Difficulty walking, such as walking on toes, a crouched gait, a scissors-like gait with knees crossing or a wide gait.
Excessive drooling or problems with swallowing.
Difficulty with sucking or eating
Delays in speech development or difficulty speaking
Q: Is it curable? Treatable?
A. CP is not curable, but we can manage its symptoms and effects. Early identification and ongoing medical intervention are the best ways to prevent or correct associated problems, anticipate future needs, and maximize patients’ abilities throughout their lives. There are some drugs to minimize the symptoms and effects of this condition. It depends on the individual needs of each child.
Q: What happens when the disease advances to later stages? Does the child become completely dependent on others to perform even his basic chores? How is he/she managed at this stage?
A. Because every child with CP brings a unique combination of strengths and weaknesses, at our centres, we tailor our services to address individual needs and challenges. Specialists in a broad array of medical fields form multidisciplinary teams to conduct thorough patient evaluations. Our experts then work closely with children and their families to develop comprehensive treatment plans.
The effects of cerebral palsy require lifelong attention. As the children pass adolescence, we address the need for independence and discuss the transition to adult focused services.
We recommend services based on the cause and type of brain damage present and on any resulting disabilities.
Q: What is the end goal you aim at when considering a child who has reached an advanced stage of this neurological disorder?
A. If the child’s condition is at an advanced stage, there are some surgical options which help to improve the condition, to lead a comfortable life. This again depends on the individual needs and the severity of the condition.
Q: As the Founder and Chairman of the first and only organization for Cerebral Palsy in Sri Lanka, I understand you have devised different innovative methods to help children with CP?
A. We work on a unique concept to provide all necessary services under one roof. We have our centres in Colombo to provide these vital services, and our vision is to start at least one such centre in each district of Sri Lanka. Early this month (October 5) to mark World Cerebral Palsy Day, CPLF in partnership with MJF Charitable Foundation launched the National Centre for Children with Cerebral Palsy and other Developmental Disorders (NCCCPDD) in Kalapaluwawa, Rajagiriya.
This centre serves as a national hub in giving education, therapy and training, not only for those living with CP and other developmental disorders but also for their caregivers, teachers and other professionals who work with such special needs individuals.
We offer special education using the local curriculum and Individualized Education Plans (IEP) for children registered with the centre.
We also provide specialized therapy and rehabilitation services, such as, Bobath therapy, Aquatic therapy (wheelchair accessible pool), Sensory Integration therapy, Dysphagia (difficulty in swallowing) management etc. These services are provided free of charge to children who are registered and attending the centre on a regular basis.
A multidisciplinary team of health care providers develops an individualized cerebral palsy treatment plan based on the patient’s needs and problems. The team comprises a Pediatrician, Pediatric Neurologist, or Neurologist and others to help diagnose and treat children with muscle or bone problems, speech and language therapists to diagnose/treat language difficulties in children with CP, occupational therapists to teach life skills, psychologists to address negative or destructive behaviours and physiotherapists to help prevent muscles from growing weak and atrophied or rigidly fixed from contracture, with daily exercises.
Q: Role of parents to help their children?
A. As a parent of a child with CP, I can only advise parents to follow these simple rules: Learn all you can about CP. The more you know, the more you can help yourself and your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun. Learn from professionals and other parents how to meet your child’s special needs, but try not to turn your lives into one round of therapy after another. Keep yourself informed about new treatments and technologies that may help. Be patient, keep up your hopes for improvement.
Q: Any new breakthrough in detecting or treating CP?
A. In July 2016, CPLF organized a General Movements Assessment training program for health professionals working with these children. This new assessment method offers compelling evidence that qualitative assessment of General Movements (GMs) at a very early age is the best predictor for cerebral palsy. This method which has become a potent supplement to the traditional kind of neurological examination, will help professionals in early identification of these children, so they can start treating them early.
Q: Your message to parents of children with CP?
A. We are working on a National Register for CP in Sri Lanka. We request parents with CP children to register with us so that we can extend our services to their children.
Q: How can they contact you?
A.Call us on 0714342247/0777592382.