OBJECTIVE: This study was designed to assess the level of caregiver burden of Filipino parents taking care of their children with developmental disabilities and to identify other factors contributing to their burden.
METHODOLOGY: The study participants were parents of children with developmental disabilities diagnosed in the Neuro-developmental Clinic of the University of Santo Tomas Hospital. They were asked to complete a survey, which included the following: 1) General demographics questionnaire that included the ff information: number of children, family income, marital status, educational level and occupation of the parents; 2) Adaptive behavior questionnaire designed to gather specific data about the abilities of the child with the disability; 3)Family Support Scale that measures the helpfulness of sources of support for families with developmentally disabled children, which is divided into informal support that included the patients, grandparents, siblings, relatives, church and government programs and the formal support, which included the physician, teachers and therapists; 4) Caregiver Burden Scale adapted from Zarit. The data was analyzed using frequency counts and percentages. Bivariate and multivariate analysis was used to determine the association of the data. A 95% confidence level was considered significant.
RESULTS: The majority (80%) of the caregivers were mothers, with a mean age of 38 years old, high school graduates and with an annual income of more than PhP 100,000. The families had an average of 1-2 children. The mean age of the children with disabilities was 6 years, and were categorized as having Global Developmental Delay [GDD] (50%), Mental Retardation [MR] (27%), Attention- Deficit Hyperactivity Disorder [ADHD] (13%) and Autism (10%). The level of burden seen among the caregivers was moderate, which was significantly associated with the annual income, severity of the disability, and the total family support score. Multivariate analysis showed that the severity of the developmental disability was an independent factor for caregiver burden.
CONCLUSION: This study provided evidence that both fathers and mothers of children with developmental disabilities seen in the Neurodevelopmental Clinic of the University of Santo Tomas Hospital experienced similar levels of stress as parents in the Western countries as well as feelings about lack of informal social support. High level of burden was significantly associated with an increased level of disability.

Human ; Male ; Female ; Adult ; Child ; Adaptation, Psychological ; Attention ; Attention Deficit Disorder With Hyperactivity ; Autistic Disorder ; Caregivers ; Developmental Disabilities ; Emotions ; Fathers ; Grandparents ; Intellectual Disability ; Marital Status ; Mothers ; Parents ; Siblings ; Social Support

INTRODUCTION: We report a 17-month old girl with a congenital erythematous papule with fine tuft of hair over her lumbosacral area that later developed multiple intraspinal abscesses involving the whole length of her spinal cord as well as tethered cord and dermal sinus at the level of L3-L4 seen on spinal magnetic resonance imaging (MRI). CLINICAL PRESENTATION: She presented with gross motor delay, and then had yellowish discharge draining from her dermal sinus at 10 months of age treated with an oral antibiotic. The yellowish discharge recurred at 17 months of age associated with intermittent fever, progressive paraplegia, flaccidity, areflexia of her lower limbs and urinary and stool retention. DIAGNOSTIC WORK-UP: She underwent spinal cord MRl aside from the laboratory examinations that included complete blood count, urinalysis, blood culture and sensitivity, wound discharge culture and sensitivity and coagulation profile. TREATMENT AND FOLLOW-UP: The patient was given ceftriaxone, vancomycin and oxacillin preoperatively. She underwent laminectomy, excision of dermal sinus tract and drainage of pus. Postoperatively, she was maintained on meropenem for 6 weeks and continued physical therapy as an outpatient basis.

Human ; Female ; Infant ; Spinal Cord ; Abscess ; Bacterial Infections And Mycoses ; Infection ; Suppuration ; Dermoid Cyst ; Neoplasms ; Cysts ; Neural Tube Defects ; Nervous System Diseases ; Nervous System Malformations

INTRODUCTION

We report 2 young brothers (ages 5 and 7 years) who had practically the same clinical history. Following investigations, these brothers were confirmed to have a rare genetic disorder called Pelizaeus-Merzbacher disease (PMD). A review of the local literature failed to reveal any previously reported cases of this disorder, thus we aim to report these brothers for awareness and recognition.

CLINICAL PRESENTATION

Both presented with roving eye movements at an early age, together with hypotonia, and subsequently were delayed in all aspects of development.

DIAGNOSTIC WORK-UP

Both boys underwent cranial magnetic resonance imaging (MRI) studies showing diffuse hypomyelination. Visual evoked potentials (VEP), brainstem auditory evoked responses (BAER), and somatosensory evoked potentials (SSEP), were abnormal, all showing delayed latencies. Nerve conduction velocity (NCV) studies were normal. Molecular gene analysis of the patients' blood and that of their mother confirmed the diagnosis of Pelizaeus-Merzbacher disease on the brothers and the carrier state of the mother.

TREATMENT AND FOLLOW-UP

Although there is no specific treatment, supportive treatment and genetic counseling may be offered. Both boys are regularly being followed-up and improvement in their neurodevelopmental status as well as progression of the disease has been slow.

Human ; Pelizaeus-merzbacher Disease