Symptoms of D/EE-SWAS: More Than Just Seizures

The hallmark of D/EE-SWAS is a noticeable change in how a child learns, speaks, or behaves. While many epilepsy syndromes are defined by the type of seizures a person has, D/EE-SWAS is primarily defined by regression—the loss of skills—or stagnation, where a child stops gaining new skills ^[1]. This shift typically begins between the ages of 2 and 12, with many children showing the first signs around 5 to 7 years old ^[2][3].

Recognizing Pathological Regression

It is common for children to go through “phases” where they are more emotional or less focused. However, the regression seen in D/EE-SWAS is different because it represents a persistent loss of previously mastered abilities.

• Language Loss: This may start with a child struggling to find words or having trouble understanding instructions they used to follow easily ^[4]. In some cases, a child might stop speaking in full sentences or lose their vocabulary entirely ^[1].
• Cognitive and Academic Decline: Parents often notice a “mental fog.” A child who was once bright and engaged may suddenly struggle with basic puzzles, memory tasks, or schoolwork ^[5]. Attention and executive function (the ability to plan and organize) are the most commonly affected areas, impacting up to 75% of children ^[6].
• Behavioral Shifts: You might see new or intense hyperactivity, aggression, or a withdrawal from social interaction ^[7]. Some children develop behaviors that resemble autism, even if they never showed those signs before ^[8].
• Motor Skill Changes: This can appear as sudden clumsiness, losing the ability to use a fork or tie shoes, or a general loss of coordination and balance ^[1][6].

The Role of Seizures

One of the most confusing aspects of D/EE-SWAS is that a child can have the condition without ever having a visible seizure. In some groups of patients, up to 30% to 40% of children did not have documented seizures at the time of their diagnosis ^[9][10]. In these cases, there is an abundance of abnormal epileptiform discharges (spikes and waves) during sleep. These interictal discharges are not necessarily individual clinical seizures, but they act like electrical noise that interferes with daytime learning ^[11].

However, many children do experience visible seizures. These can take several forms:

• Focal Seizures: These start in one part of the brain and may cause involuntary movements, strange sensations, or a brief period of “blanking out” where the child is awake but unresponsive ^[9][12].
• Atypical Absence Seizures: These look like staring spells, but unlike a typical “daydream,” the child cannot be easily snapped out of it.
• Atonic Seizures (Drop Attacks): A sudden, brief loss of muscle tone that causes the child to go limp. This can lead to the head dropping forward or the entire body falling to the ground ^[13].
• Generalized Tonic-Clonic Seizures: These involve the whole body stiffening and jerking; they often occur at night or just before waking up ^[14].

Is it a “Phase” or D/EE-SWAS?

Distinguishing between typical childhood behavior and medical regression can be difficult. A “phase” is usually temporary and often related to a specific stressor. In contrast, pathological regression in D/EE-SWAS is characterized by a loss of skills. Clinically important regression can be selective, subtle, or initially limited to one domain. Any clear loss of previously acquired skills deserves prompt medical assessment. Do not wait for the regression to become global or wait weeks before contacting a doctor ^[1][6].

If you notice a clear “before and after” point in your child’s abilities, keep a symptom diary to share these specific observations with your medical team. Documenting when a skill was lost and whether it was replaced by new, unusual behaviors is vital for an accurate diagnosis ^[1].

Basic Seizure First Aid

Because visible seizures can occur, you should have a Seizure Action Plan from your doctor. If a convulsive seizure occurs:

1. Ease the child to the floor and place something soft under their head.
2. Turn them onto their side (recovery position) once movements stop.
3. Do not put anything in their mouth.
4. Call Emergency Services (911) if the seizure lasts 5 minutes or longer, if repeated seizures occur without recovery, if there is breathing difficulty, or if it is a first prolonged seizure.