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Neurological Disorders

Early Epilepsy Diagnosis and Treatment Can Make All the Difference

Colton and his family found out firsthand why early detection and treatment of epilepsy can be an invaluable gift.

Colton’s story

When Colton was 6 years old, his mother became concerned about some unusual behaviors he was exhibiting. When he woke up in the morning, he would yell and grab for his mother frantically; During these episodes, his whole body would vibrate. Then at other times throughout the day he would grow incredibly still, staring off into the distance, and would then return to normal after a few minutes. When these behaviors did not lessen up, Colton’s concerned mother took him to the pediatrician who referred Colton to a child neurologist with special training in epilepsy. The neurologist diagnosed Colton with frontal lobe seizures, a form of epilepsy.

Colton’s condition was caught early enough that he and his family were able to seek epilepsy treatment to control his seizures and prevent long-term complications. Some are not so lucky, however — many go for months or even years without being diagnosed or receiving effective treatment.

Early detection

About 2.5 million Americans have epilepsy, a condition that affects more people than autism, cerebral palsy, multiple sclerosis and Parkinson’s disease combined. Epilepsy causes repeated seizures, or neural electrical storms that disrupt impulse function. The condition is very complex and no two cases are alike.

The disease may start as early as a few hours after birth and result in delayed development, sometimes preventing children from being able to walk, talk or see. Epilepsy may strike in early childhood, the teenage years, or even later in life — for example, after a stroke. Seizures can occur at any time or place and can range from a subtle slowing down in activities, staring spells, sudden twitches and head drops to collapses on the ground. Because seizures can be so varied, many family members (and even healthcare providers) don’t recognize them as epilepsy, thus delaying the diagnosis. Even once the patient is diagnosed, however, the uncertainty and unpredictability of the disease is difficult as they live with fear and anxiety about when the next seizure will occur.

Medication and management

For most patients, seizures can be controlled with one or two medications. In other cases, it takes some trial-and-error in the combination of medications, which can be frustrating for patients, families and healthcare providers. Additionally, medications can have severe side effects, such as poor school and work performance, fatigue, weight gain, mood disturbances and bone loss, making adherence to a treatment regimen challenging. For most patients, however, taking medication as prescribed is essential to quality of life and the side effects are not as bad as the risk of traumatic seizure.

Finding the right medication (or medications), assessment for surgical intervention and/or other treatments that prevent seizures with no side effects is the goal. Epilepsy centers offer alternate therapies with new drug trials, ketogenic diets (high fat diet) and surgical insertion of a vagal nerve stimulator (VNS) as well as specifically tailored epilepsy resections. Healthcare providers who are unsure if a patient is experiencing seizures should refer the patient to an epilepsy specialist or epilepsy treatment center. Specialized comprehensive epilepsy care centers use a multidisciplinary, holistic team approach to diagnose and treat epilepsy. Specialists at these centers focus on providing personalized treatment, including analyzing genetics and behavioral patterns.

There is a growing need for epilepsy specialists and treatment centers. Supporting the expansion or development of accredited epilepsy centers would substantially improve the availability of this important care. Through these centers, the path forward for patients with epilepsy can be one of hope and optimism. As Colton and his family can attest, quality of life improves and treatment is more accurate with early, specialized care.

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