“I really thought Cerebral Palsy (CP) was a disease that will be cured one day. But, later found it is a condition that my daughter has to live throughout her life,” said an emotional Shobha Sachdev, mother of a 34-year-old who is suffering from CP. Shobha shared her experience as a caregiver on the second day of the ongoing 10th World Congress for Neurorehabilitation at Renaissance, Powai.
For us, every day has been a new day, new challenge and new learning. “Today, my daughter is financially independent and runs a beauty salon. But the unanswered question that haunts me is the financial constraints the other parents face. Though, I had resources,” said Sachdev.
Dr Shabnam Rangwala, director therapy services, ADAPT said, “CP management is a team approach and involves social worker, paediatrician, physiotherapist, orthotist, occupational therapist, neurologist, orthopaedic surgeon, special educator, psychologist and speech therapist.”
In one of the most interactive sessions of WCNR 2018, Dr Martin Staudt , neuropaediatrics and developmental medicine children’s hospital, university of Tubingen, Germany, said the diagnosis of CP relies on history and physical examination where MRI shows the underlying brain lesion in 80-90% of cases. He as well as all the experts at the session underlined the need to have correct diagnosis of CP. “Many a times a child who doesn’t have CP, is treated for CP. I believe that a child with CP (and the family) needs appropriate information on etiology and pathogenesis,” said Dr Staudt.
As per him, repeated neuroorthopaedic assessment is needed for the early detection and treatment of musculoskeletal complications like hip dislocation and scoliosis. In his talk , Dr Staudt said rehabilitation in children with CP must start with proper diagnostic work-up and should be multidisciplinary. “It is an ongoing process which often requires modification according to individual needs and early recognition/treatment of complications, ” he informed.
Dr Neelu Desai, paediatric neurologist at PD Hinduja Hospital explained that CP is a non progressive , hanging disorder of posture and movement due to lesions or anomalies of developing brain. The worldwide incidence of CP is 1.5 to 2.5 in 1000 live births. She said early prone or delayed head control and early or asymmetric handedness are few of the red flags on how to pick up CP early. “The comorbidities associated with CP are epilepsy, GER, constipation, nutritional deficiencies, scoliosis, osteoporosis, aspirations, respiratory infection, autism and ID,” said Dr Desai.
Experts further stated that CP treatment involves multidisciplinary approach including therapy, drugs and surgery. “The goal is to improve the functional ability and independence, decrease pain , prevent contractures, facilitate hygiene and involve child in school and community activities.
The session also included talks by paediatric orthopaedic surgeons- Dr Ashok Johari and Dr Taral Nagda. Dr Johri gave a brief background of cerebral palsy management in India and encouraged parents to allow CP children to play for muscle strengthening. He emphasised the need to undergo hip X-Ray on every birthday, especially for CP children who are unable to walk. Dr Nagda, paediatric orthopaedic surgeon, said, “CP treatment is a team game and can’t be treated by one professional. The parent is an umpire.”
He concluded his talk saying life doesn’t end with CP. “Children with CP have become doctors, CA, scientists, designer etc, etc. We need to spread awareness on the fact that with CP, life doesn’t end,” said Dr Nagda.