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our directory of newsletters, articles, therapies, videos, policies, communities and other LINKs about childhood disability

Articles

AllGeneral disabilities
Attention deficit hyperactivity disorder Autism spectrum disorder Cerebral palsy Congenital Heart Disease Down syndrome Epilepsy Global developmental delay High Risk Newborn Juvenile Arthritis Mental Health Traumatic Brain Injury

Are children with heart conditions receiving the rehabilitation services they NEED?

Learn about Congenital Heart Disease

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The purpose of this study was to describe the educational and rehabilitation services being provided to young children with heart conditions who had had open-heart surgery.

Is infection linked to brain injury in babies born with CHD?

Learn about Congenital Heart Disease

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Brain injury after birth is common for newborns with congenital heart disease. That is because heart disease contributes to immature brains, similar to the brains of babies who are born prematurely. Since infection increases the risk of brain injury in premature newborns, it seems reasonable to think that it might also increase the risk of brain injury in newborns with congenital heart disease. However, a study conducted by American researchers failed to find a significant link between infection and later brain injury in newborns who had undergone surgery to treat heart disease.

How does adherence to medication and exercise impact children with juvenile arthritis?

Learn about Juvenile Arthritis

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Results of this study demonstrated that moderate adherence to medication was associated with a lower active joint count, while moderate adherence to exercise was associated with a better functional score and lower pain. Both high and moderate adherence to exercise were associated with a parental perception of global improvement.

A genetic database can help further our understanding of the inheritance patterns of congenital heart disease

Learn about Congenital Heart Disease

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Congenital heart defects make up the largest category of malformations in Canadian children and are a significant cause of death in infants under one. However, improved detection, intervention, and care strategies are now allowing more individuals born with these defects to survive into adulthood and have children of their own. A better understanding of the genetic factors that predispose an individual to congenital heart disease is essential to not just treatment but also prevention. The database compiled in this study will continue to be augmented with information from more patients, but it has already shown that a particular type of heart defect, left ventricular outflow tract obstruction (LVOTO), is strongly linked to the inheritance of two or more genes.

Do children with Juvenile Arthritis and their parents agree about their quality of life?

Learn about Juvenile Arthritis

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Health-related quality of life is an important measure used to evaluate outcomes in juvenile idiopathic arthritis. This study aimed to determine whether parents agreed with their children on their child’s perceived quality of life. A better understanding of the entire family’s perceptions may benefit the therapeutic relationship between the service provider and the patient, and more effectively address the concerns of children with disabilities and their families.

Does caregivers recall of JAI treatment match recommendations intended by medical teams?

Learn about Juvenile Arthritis

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Caregivers’ recall of treatment-adherence is critical in helping medical teams make clinical decisions for JAI. However, caregivers may believe they are adhering to treatment when in reality, their understanding of the recommendations are different than the ones intended by the medical team. In this study, the agreement between caregiver recall and prescribed treatment was calculated. Agreement for medication-related recommendations was substantial; however, agreement for exercise-related recommendations was slight to moderate. Health care providers need to make sure their patients understand treatment recommendations, particularly for exercise regimens.

Genetic variation in folate metabolism may be linked to inherited heart defects

Learn about Congenital Heart Disease

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Folate is an essential ingredient for healthy embryonic development. It is a vitamin that naturally exists in many foods, however, not all new mothers always had access to it. In 1998, Canada mandated that all grain products should incorporate Folic acid, the synthetic form of folate. After ingesting folate or folic acid, the mother’s body converts this vitamin into an active form that is crucial for embryonic development. It helps cells divide and helps build and maintain DNA.

Brain abnormalities are present before birth in many children with congenital heart disease

Learn about Congenital Heart Disease

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This study adds to emerging evidence of a prenatal origin of brain abnormalities in children with CHD. The new knowledge may allow practitioners to target neurodevelopmental therapies at a very early age, thus improving long-term outcome among children with CHD.

Towards a better understanding of the detection, causes, and management of stroke in newborns and children

Learn about High Risk Newborn

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Pediatric stroke is rarely fatal but about half of those who survive will develop a long-term neurological deficit. Current advances in neuroimaging are making it easier to recognize stroke so that newborns and children can be targeted for appropriate supportive and neuroprotective treatment to minimize long-term damage.

Topiramate may be effective for treating seizures in newborns

Learn about High Risk Newborn

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Seizures in newborns may cause brain injury or they may be indicative of an underlying brain injury, and it is essential to treat injuries in addition to the seizures. For decades, neonatal seizures have been treated with phenobarbitol and phenytoin, even though these have limited success and may be harmful to the developing brain. Rigorous studies may show that topiramate is a safer and more effective treatment for seizures in newborns.

Readily available indicators may predict risk of adverse outcome in asphyxiated newborns who experience seizures

Learn about High Risk Newborn

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Depending on the extent of brain injury, one or more developmental disorders may emerge in newborns who experience seizures following birth. The indicators described in this study do not precisely predict which disorder will appear or how severely it will affect the child, but they do provide a good idea of whether or not the possibility for future developmental deficits exists.

One case of extreme prematurity suggests a possible link between cerebellar injury and autism spectrum disorders

Learn about High Risk Newborn

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This report of a survivor of extreme prematurity with cerebellar injury, who was diagnosed with autism spectrum disorder (ASD), adds to growing evidence of a link between this spectrum of disorders and prematurity associated cerebellar injury.

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LINK Highlight

Ensuring the mental health of children 5-12 years old before and after the COVID-19 pandemic

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This newsletter evaluates the impact of the Covid-19 pandemic on the mental health of children 5- 12 years of age and the unique challenges experienced by children with neurodevelopmental disorders. The aim is to provide recommendations to support children’s mental health during and after the pandemic.

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