The evaluation for people with DEE focuses on the following:

  • Identifying the underlying cause,
  • Evaluating current seizure frequency and types,
  • Identifying other medical and psychosocial issues that need to be addressed
  • Determining treatment options

The most important part of the evaluation will be sitting down with your health care provider and having a detailed discussion about developmental, medical, and seizure history. Additional evaluations will be arranged based on that discussion. Depending on the history and circumstances, evaluations may be made in a stepwise or more comprehensive fashion. Stepwise testing allows more selective evaluation, with a few tests being ordered and then additional tests being ordered only if the first tests do not reveal the underlying cause.

As we learn more about more precision epilepsy treatments, identification of the specific cause can be helpful in determining preferred treatments. EEG (electroencephalogram) and brain MRI (magnetic resonance imaging) are performed as common practice. Blood tests for genetic disorders should be strongly considered in most cases, and the person’s genetic tests may be compared to those of his/her parents. Tests looking for possible metabolic or inflammatory disorders may be performed on blood, urine, and/or spinal fluid samples. Finally, if it is felt that seizures are coming from a focal area of the brain, but the MRI does not help in figuring out where seizures are coming from, other imaging tests may be performed, including PET (positron emission tomography) and MEG (magneto-encephalography).

During the visit, the doctor will take a careful history of all seizure types, including a description of what the person does, how long they last, how often they occur, what the person is like after the seizure, and seizure triggers. They will also ask about whether, and how often, seizure rescue medications are needed for each seizure type. Sometimes, the history alone is not sufficient. Prolonged EEG may be used to determine how many times per day seizures occur or to better classify what types of seizures the patient is having. Prolonged EEGs with video are most helpful. This is done either in the hospital setting (prolonged video EEG) or at home (prolonged ambulatory EEG). Home videos of the different seizure types are also helpful and may decrease the need for a prolonged EEG.

People with epilepsy are at risk for learning, behavioral, and emotional disorders. Those with DEE not only are more likely to have these difficulties, but also likely to have other medical complications. It is important to treat the whole person and address all areas of concern. Comprehensive care with good communication between the different providers is important. Often, a comprehensive or complex care clinic can help families manage all of the different providers involved in the care of their loved one.

While anti-seizure medications (ASMs) are the mainstay of epilepsy treatment, those with DEEs often have an incomplete response and additional treatment options may be pursued. These options can include trials of other medications, especially if the person has not yet tried medications shown to be more helpful for his/her epilepsy syndrome. It is important to keep a record of all of the different treatments your loved one has previously tried. If the evaluation of current seizure types suggests the majority of seizures are coming from one area of the brain, surgery to remove that area might be possible. If the evaluation suggests an underlying metabolic or inflammatory disorder, this will lead to other treatment options. Finally, the person should also be evaluated to see if he/she is a candidate for ketogenic diet.


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