Challenges in care of the child with special health care needs in a resource limited environment
We present a 10 year old male, who presented with a history of recurrent seizures and impaired speech development from the age of 6 months, hyperactivity, aggressive behavior and poor academic performance of 5 years duration. Informant was the mother. The seizures were described as afebrile and generalized tonic-clonic in nature. The child received several medications, from the hospital of his birth and other secondary health care facilities, for the seizures. Parents introduced traditional herbal oral medication at 2 years when seizures remained intractable, and which he continued till presentation at the CAMH unit. Speech has remained audible but incomprehensible since the 6th month of life till date and has not received any specific therapy for this. Though described as socially interactive with people he was observed to be hyperactive and aggressive in the past 5 years. These features, in addition to the recurrent seizures even in school had resulted in poor academic performance. Persistent complaints and rejection by schools culminated in complete withdrawal from school. Pregnancy and delivery were uneventful. Developmental motor milestones were described as normal until the 9th month of life when parents observed comparative weakness in the left upper and lower limbs. He started walking with a limp at 2 years. He developed a facial rash at 5 years which has increased in spread and defied repeated administration of a variety of topical skin creams. He was first diagnosed as having cerebral palsy at 2 years. It was at 5 years of age that a diagnosis of Tuberous Sclerosis was made in a tertiary health facility. After 2 years of several visits to this facility, the parents stopped attending due to lack of significant improvement in the child's condition and non availability of the special health services such as speech therapy. Currently he is at home and away from school. He is being tendered to by his mother, who had to relinquish her career pursuit, and two hired house helps. There was no family history of seizures. Father is a 37 year old salesman. The child has two younger siblings who have no growth or developmental challenges. Expenses incurred in the care of child were described as prohibitive and have been borne exclusively by the parents. On a monthly basis, his care is said to consume over a third of the family resources. Parents are not aware of any support group or supportive governmental program they can access. Increasing inappropriate hostility towards parents, relatives and other caregivers in addition to the associated difficulty in restraining him and the embarrassment the parents feel from his untoward activities informed his presentation to the CAMH Unit. On examination at presentation he was hyperactive but well kempt. He had Adenoma Sebaceum []. Weight, height and occipito- frontal circumference were appropriate for age. Other significant findings were expressive language disorder and left hemiplegia. Chest x-ray, abdominal ultra sonography and audiogram were normal. Electroencephalogram (EEG) indicated generalized tonic clonic-seizures. A CT-Scan showed intra-ventricular subependymal calcifications []. He had features of Attention Deficit Hyperactivity Disorder (ADHD). Outcome of draw-a-person test was very poor. Overall, a diagnosis of Tuberous Sclerosis with mental retardation, left hemiplegia and ADHD was made. Outlined management included parental counseling, physiotherapy for the hemiplegia, sodium valproate and methyl phenidate were prescribed for seizures and ADHD respectively. The frequency of the seizures and the degree of hyperactivity reduced with commencement of the drugs. The child and parents were subsequently introduced to a special education and rehabilitation facility in the community.