Rahul Jain

Ages and Stages Questionnaire as a Screening Tool for Developmental Delay in Indian Children

ObjectiveTo evaluate the ability of ‘Ages and Stages Questionnaire’, a parent completed developmental screening questionnaire to detect developmental delay in Indian children.DesignCross-sectional study.SettingChild Development Clinic of a tertiary care center located in Northern IndiaParticipants and Methods200 children, 50 each in the age groups of 4±1, 10±1, 18±1 and 24±1 months were recruited (20 high risks and 30 low risks in each age group). The Ages and Stages Questionnaire (ASQ) was translated into Hindi and administered to the parents, followed by standardized development assessment using Developmental Assessment Scale for Indian Infants (DASII).Results102 (51%) children failed on ASQ and 90 (45%) children failed on DASII. The overall sensitivity of ASQ for detecting developmental delay was 83.3% and specificity was 75.4%. The sensitivity was best for the 24-months questionnaire (94.7%) and specificity was best for the 4-month questionnaire (86.4%). The sensitivity of ASQ was much higher in the high risk group (92.3%) as compared to the low risk group (60%).ConclusionASQ has strong test characteristics for detecting developmental delay in Indian children, especially in high risk cases. It may be easily converted into other Indian languages and used widely for developmental screening.

Evaluation of a parent-based behavioral intervention program for children with autism in a low-resource setting.

Background: Intensive behavioral intervention programs are recommended for children with autism. However, in resource-constraint settings, such programs are largely inaccessible, and there is an urgent need for development of low-cost interventions. Aim: To evaluate the efficacy of a parent-based behavioral intervention program in Indian autistic children. Materials and Methods: Sixteen children with autistic disorder undergoing the intervention for at least six months were enrolled. The mean development, social, expressive, and receptive language quotients, and the Childhood Autism Rating Scale (CARS) and Autism Behavior Checklist (ABC) scores were compared before and after the intervention. Results: The average duration of therapy was 19.5±11.78 months. There was a significant improvement in the development quotient (P=0.015), social quotient (P=0.004), expressive language quotient (P=0.03), CARS (P=0.001), and ABC (P=0.014) scores. Conclusion: Parent-based behavioral intervention programs have a promising role in management of children with autism in resource-constraint settings.

Vitamin B12 deficiency in children: a treatable cause of neurodevelopmental delay.

Vitamin B12 deficiency in children can rarely cause neurologic manifestations. In this series, 14 pediatric cases (median age 11 months) have been described in whom association of vitamin B12 deficiency with developmental delay or regression was observed. Severe to profound delay was present in 8 (57%) patients. All the patients were exclusively or predominantly breast-fed and 10 of 12 mothers had low serum vitamin B12 levels. Three to 6 months after treatment, a mean gain of development quotient of 38.8 points was seen in 7 follow-ups. In settings with a high prevalence of vitamin B12 deficiency, this association should be actively searched for.

Health-related quality of life in children with cerebral palsy and their families.

ObjectiveTo determine the health-related quality of life in children with cerebral palsy and their families.MethodsOne hundred children (3–10 years of age) receiving regular rehabilitation therapy for cerebral palsy for last 1 year at a Child Development Centrer were enrolled and the Lifestyle assessment questionnaire — cerebral palsy was administered to the parents.Results9% had good, 24% had mildly-affected, 37% had moderately-affected and 30% had severely-affected healthrelated quality of life. The physical independence, mobility and social integration dimensions were much more severely affected than the clinical burden, economic burden and schooling dimensions.ConclusionHealth-related quality of child is affected in most children with cerebral palsy.

Children with developmental disabilities in India: age of initial concern and referral for rehabilitation services, and reasons for delay in referral.

This study aimed to identify the age at first concern and age at referral for rehabilitation services in children with developmental disabilities in India. Two hundred fifty-nine children were included and data were collected from the parents. In children with developmental disabilities (excluding autism spectrum disorders), median age at initial concern was 7 months and age at referral for rehabilitation services was 13 months. In children with autism spectrum disorders, median age at initial concern was 24 months and age at referral was 42 months. Physician’s recognition of the condition, single child, institutional delivery and neonatal admission ≥4 days were associated with early referral. The common reasons cited by the parents for delay in services were reassurance by physicians or family members and nonreferral by the physicians. Thus, routine screening for developmental problems (including autism) and improving the awareness of these conditions among physicians and society would lead to early referral.

Myositis ossificans of bilateral hip joints in a patient with diplegic cerebral palsy

Myositis ossificans (MO) occurs in association with musculoskeletal trauma, traumatic and non-traumatic neurologic conditions, joint surgery and rarely as a hereditary disorder. We report a 6-year-old boy with diplegic cerebral palsy who developed MO of his bilateral hip joints after initiating physiotherapy. He responded well to conservative management.

Effect of multilevel lower-limb botulinum injections & intensive physical therapy on children with cerebral palsy

Background & objectives: Botulinum toxin is considered as an effective treatment for spasticity in children with cerebral palsy (CP). However, there are only a few long-term studies, and the effects on motor function have been inconclusive. Moreover, due to its high cost and need for intensive post-injection therapy, utility in context of developing nations has not been established. This retrospective study was undertaken to assess the long term effects of botulinum toxin-A with physical therapy in children with CP. Methods: This retrospective study was conducted at a tertiary care centre in India, where a limited supply of botulinum toxin was introduced in the year 2009. It was used in a selective group of patients with CP along with intensive physical therapies. All children who received lower-limb botulinum injections over a 42-month period were analyzed. For evaluation of treatment effect, the measurement at 1st pre-injection assessment and the last measurements, i.e. 12 wk after last injection received by that child were compared. Results: Twenty nine patients (20 males, median age 51 months) received 69 sessions of botulinum toxin injections in the lower limbs over a 42-month period. Thirteen patients were diplegic, 10 were quadriplegic, five were triplegic and one was hemiplegic. There was a significant improvement in pre- and post-injection scores on Observational Gait Scale (right side 7.1±3.6 to 10.7±3.7, left side 6.7±3.5 to 9.9±3.4), Gross Motor Function Measure Scale (47.9±17.7 to 67.6±17.2), Modified Ashworth Scale, passive range of motion and Gross Motor Function Classification System. Most of the patients showed gain in motor milestones as well. Interpretation & conclusions: Our results showed that judicious use of botulinum injections along with intensive physio/occupational therapies could yield good results in children with CP.

Locked-in syndrome: A rare manifestation of pediatric stroke

Locked-in syndrome is characterized by upper motor neuron quadriplegia, paralysis of lower cranial nerves, bilateral horizontal gaze palsy and anarthria, with preserved consciousness. It is due to a ventral pontine lesion following a basilar artery occlusion. We report the first Indian case report of locked-in syndrome, a 10-year old girl in whom the syndome was preceded by a ‘herald hemiparesis’. Although the exact etiology for the basilar artery occlusion could not be determined, treatment with low molecular weight heparin and warfarin was followed by partial recovery.

Valproate associated hyperammonemic encephalopathy

Valproate associated hyperammonemic encephalopathy is a rare complication of valproate use, distinct from the more well-known valproate-induced hepatotoxicity with coma in young children, and the common finding of asymptomatic hyper am- monemia associated with valproate use. We herein present a 21-month-old child with valproate associated hyperammonemic encephalopathy and discuss pertinent diagnostic and therapeutic issues for the pediatrician.

Reply to Correspondence

Sir, We appreciate the comments on this article. It has been rightly stated that the prevalence of autism is increasing worldwide and there is a need to prepare to deal with this epidemic. India being a developing country with a large population, it seems to have a mammoth task ahead. Some steps have already been initiated with this intent. Increasing the awareness of autism among parents and professionals is the first and foremost step. The institute from which this study was reported has itself organized many workshops and conferences toward this goal, over the last few years. A popular Indian television serial by the name of ‘‘Aapke Antra’’ telecasted in year 2009-2010, featuring a girl with autism really helped in increasing the understanding of this condition among the general people as well as professionals. The availability of screening and diagnostic tools for autism has also increased over the last few years. The Modified Checklist for Autism (MCHAT) has been translated into some Indian languages and is freely available online. Two new tools for diagnosis of autism have been recently developed and validated for use in our population (INCLEN Program Evaluation Network Study Group, personal communication, 2012). The efforts are being partly reflected in the increasing number of studies on Autism published from India in the last decade. Studies from India show that the mean age at diagnosis of autism has decreased from 4 years 11 months in a study done a decade ago to around 3 years 6 months in the present study. With respect to intervention services, the Government of India has enacted various laws and launched programs to help children with developmental disabilities. The Persons with Disability (PWD) Act 1999 is the cornerstone of India’s disability policy, with a key provision of inclusive education of children with disability in regular schools. Unfortunately, autism was not included in this act. With India signing up for United Nations Convention on rights of persons with disabilities, things are likely to improve. Recently in February 2013, an early intervention program by the name of ‘‘Rashtriya Bal Swasthya Karyakram’’ has been launched under the National Rural Health Mission with an aim of child health screening and early intervention. Overall, it appears that India is gearing toward a better future for its disabled children; however, the present situation is gloomy and much more needs to be accomplished. Presently, majority of the services on developmental problems are concentrated in large metropolitan cities of India. In smaller cities and villages, there is almost a complete lack of diagnostic and intervention services. There is a dearth of trained professionals for diagnosing and managing mental handicaps including autism. The implementation and outcomes of the recently launched screening and early intervention program is much awaited. To summarize, what India needs at this moment is an effective implementation of its policies, promoting facilities for training of professionals and research, development of a robust mechanism of screening and diagnosis of developmental disabilities, and establishment of intervention services across the country.