Every child with a SARS1-related disorder is unique, but there are some common challenges that many families face. Understanding these can help you know what to expect and how to best support your child.
How it Affects the Brain and Development
● Learning and Milestones: Almost all children with this condition will have developmental delays. This means they might be slower than other children to reach important milestones like sitting up, walking, and talking. They will likely need extra support for learning throughout their lives, and special education services at school are very important.
● Seizures: Many children experience seizures, which can sometimes start when they are babies. A seizure is a sudden burst of uncontrolled electrical activity in the brain. A neurologist (a doctor who specializes in the brain) can help find the right medication to control or reduce the seizures.
● Movement and Coordination: As babies, many children have low muscle tone (hypotonia), which can make them seem "floppy" or weak. As they get older, they often develop challenges with balance and coordination, a condition called ataxia. This can make walking and other motor skills difficult. Some children may also develop stiffness in their muscles, especially their legs, which is called spasticity.
How it Affects Growth
● Head Size: Many children with the most common form of this disorder will develop a smaller head than is typical for their age. This is called microcephaly. Your child's doctor will monitor this by measuring their head circumference at check-ups.
● Overall Growth: Some children may have trouble gaining weight and growing. This can be related to feeding difficulties, such as trouble swallowing. A team of specialists can help ensure your child gets the nutrition they need to grow.
Other Health Concerns to Watch For
● Hearing: Some children are born with or may develop hearing loss. It is very important to have your child's hearing checked regularly by a specialist called an audiologist.
● Heart: A small number of children may have a heart condition called cardiomyopathy, which affects the heart muscle. A heart doctor (cardiologist) will usually check your child's heart with a special ultrasound called an echocardiogram to make sure it is healthy.
● Getting Sick: Children with this condition can sometimes become very unwell when they get a simple illness with a fever. It is important to contact your doctor right away if your child develops a fever so they can be monitored closely.
SARS1