Misdiagnosis of epilepsy in children is common, but preventable
| October 03, 2013
At age 8, "Michael" was a standout on the basketball court and in the classroom. He loved sports, and his coaches were impressed with his passion as well as skill.
His teachers found him a delight in the classroom and reported not only an inquisitive young man, but an intelligent student to his parents during conferences. This changed when Michael began to experience episodes of inattention, staring, extended lethargy and short blackouts.
Michael was diagnosed as having seizures. His physicians began drug treatments for an epilepsy seizure disorder, and much of Michael’s academic and athletic momentum was lost. While still an enthusiastic student-athlete, the side effects of the medications impacted his performance on the court and in the classroom.
Brokenhearted, Michael's parents resigned themselves to a future of extended medical treatments with anticonvulsant drugs and medical evaluations and monitoring, but were grateful to have what was described as a healthy child.
More than two years later, during a routine evaluation, doctors discovered an irregularity in Michael’s heart; diagnosed later as a hole in the wall of his heart. Imagine the parents' frustration and guilt when after a one-time surgical procedure Michael was returned to his previous self without the need for the behavior-altering medications.
But Michael’s parents are not alone.
A study in 2000 found as many as 20 to 40 percent of epileptics may have been misdiagnosed. In the research, 31 of 74 adult men diagnosed with epilepsy were found to have an alternative diagnosis, and this included 13 of 36 men who had been receiving anticonvulsant medications.
Nineteen men were diagnosed with vasovagal syncope, leading the researchers to conclude that simple, noninvasive cardiovascular evaluations should be considered in the early management of patients considered to have symptoms of seizure disorders.
Blackouts at any age can be related to syncope rather than epilepsy. For this reason, cardiovascular evaluation should be considered early in the management of patients thought to have convulsive episodes with blackouts.
It is not out of the ordinary for a patient suffering what is perceived to be a convulsion to not receive evaluations of heart function or heart rhythm, and the misdiagnosis of epilepsy can persist for several years.
Long QT syndrome is a type of heart-rhythm dysfunctions often misdiagnosed as epilepsy. The delays in proper diagnosis last an average of two years, but can be as long as 20 years, according to a study of epilepsy and cardiac function.
Dr. P. Uldall and his colleagues identified 87 children that did not have epilepsy in a study of 223 children diagnosed with epilepsy. The average age of the children was similar to Michael’s age of 8 years. Of these 87 misdiagnosed children, 34 were found to have been receiving drug treatments with anticonvulsant medications. Seven of these children had been taking more than one medication.
The research group acknowledged that an outcome was to stop the unnecessary drug treatments and detrimental impact that lifestyle restrictions had imposed on the children and their families.
The treatments for actual epileptic seizures are not without cost to children and their families. The most common side effects are drowsiness, irritability, nausea, rash and clumsiness. All of these side effects can impact school activities and athletic performance, such as what happened to Michael.
Some drugs produce changes in emotions, memory or behavior, or affect learning. Frequent side effects include double vision, weight gain, hyperactivity (in children), sleep disturbances, irritability, gum dysplasia, hairiness and changes in mood. Less frequent side effects include prolonged fever, rash, severe sore throat, mouth ulcers, easy bruising, pinpoint bleeding, weakness, excessive fatigue and swollen glands, lack of appetite and increased seizures.
An electroencephalogram (EEG) is the test that measures the brain’s electrical activity. The absence of an EEG, an inadequate EEG recording, or an inaccurate EEG interpretation are considered to be major contributions to the misdiagnosis of epilepsy in children.
No matter what the failures have been that contribute to a delay in an accurate identification of symptoms, the impact of an improper diagnosis of epilepsy can have serious repercussions not just for the children involved, but their entire family.
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