Understanding Cataplexy in Children and Ways to Manage It

For parents navigating the complexities of their child’s narcolepsy diagnosis, one of the most perplexing and often unsettling symptoms can be cataplexy. Imagine your child, mid-laugh, suddenly losing muscle tone and slumping forward, only to regain their strength moments later. This is cataplexy, a unique and challenging aspect of narcolepsy that can greatly impact a child’s daily life.¹

What is cataplexy?

Cataplexy is a sudden, brief loss of muscle tone triggered by strong emotions. While it can range from a slight weakness to a complete collapse, consciousness is always maintained. It is a hallmark symptom of narcolepsy type 1 (narcolepsy with cataplexy), though not all people with narcolepsy experience it.¹

The National Institute of Neurological Disorders and Stroke (NINDS) defines cataplexy as: "sudden, brief episodes of muscle weakness or paralysis triggered by strong emotions such as laughter, anger, or surprise." This involuntary response is distinct from fainting or seizures, as the child remains fully aware of their surroundings throughout the episode.¹

What does cataplexy look like in children?

Cataplexy in children can vary. A cataplexy episode may be subtle, making it challenging to identify, especially in younger children. It is not always a dramatic fall.¹

Mild episodes might involve a drooping head, slurred speech, a buckling of the knees, or a weakening of the jaw. A child might drop objects they are holding, or their facial expression might go slack. For example, during an exciting game, a child might suddenly struggle to hold a toy, or their smile might falter as they laugh too hard.¹

More severe episodes can lead to a complete collapse, where the child’s body goes limp, and they fall to the ground. These episodes are often short, lasting from a few seconds to a couple of minutes, after which the child quickly recovers their muscle control.¹

Cataplexy is triggered by strong emotions, both positive and negative. Positive emotions like laughter, excitement, and joy are the most common culprits. However, strong negative emotions such as anger, fear, or frustration can also provoke an episode. Observing these consistent triggers is a key indicator of cataplexy.¹

Why does cataplexy occur?

Cataplexy is linked to a deficiency in a specific brain chemical called hypocretin (also known as orexin). Hypocretin neurons are located in the hypothalamus, a part of the brain that plays a crucial role in regulating wakefulness and rapid eye movement (REM) sleep.²

In those with narcolepsy type 1, there is a significant loss of these hypocretin-producing neurons. Normally, hypocretin helps to stabilize the awake state and suppress REM sleep. During REM sleep, our muscles become temporarily paralyzed, a natural protective mechanism to prevent us from acting out our dreams.²

In cataplexy, strong emotions disrupt the brain’s delicate balance, and without sufficient hypocretin to maintain wakefulness, the REM sleep paralysis mechanism is triggered while the child is still awake, leading to the sudden muscle weakness.²

Ways to manage cataplexy

Managing cataplexy involves combining medication, lifestyle changes, and modifying one’s environment. The goal is to reduce the frequency and severity of episodes and improve a child’s quality of life.¹

Medications

Several medicines can be effective in managing cataplexy:

• Wake-promoting drugs – These medicines help kids stay awake during the day. They work by increasing certain chemicals in the brain.
• Sodium oxybate – This medicine is a depressant. It helps improve nighttime sleep and reduce cataplexy (sudden muscle weakness). It is taken at night and sometimes during the day. There is a lower-sodium version called mixed salt oxybate.
• Antidepressants – Certain antidepressants can help reduce cataplexy. These medicines affect brain chemicals that are involved in muscle control.
• Histamine receptor antagonist – This is the newest classification of drugs approved to treat sleepiness in children (older than 6 years) with narcolepsy. It is taken during the day and helps to promote wakefulness.

Lifestyle changes and environmental strategies

While medicine is vital, other strategies play an important role, too.^1,3

• Identify and anticipate triggers – Help your child become aware of their personal cataplexy triggers. Keeping a journal can be helpful. Once triggers are identified, strategies can be developed to either avoid them or manage reactions to them. For example, if extreme laughter is a trigger, teaching your child to lean against a wall or sit down when they anticipate a laughing fit can prevent falls.
• Create a safe environment – For younger children, padding sharp furniture edges and ensuring clear pathways can reduce the risk of injury during an episode.
• Stress management – High stress levels may trigger cataplexy. Encourage calming activities such as reading, drawing, or quiet play.
• Regular sleep schedule – While not directly managing cataplexy, consistent sleep patterns and sufficient nighttime sleep can help improve overall narcolepsy symptoms and may reduce the intensity of cataplexy.
• Inform others – Educate teachers, caregivers, and close friends about your child’s cataplexy. Explaining what it is, what it looks like, and how to respond (i.e., that the child is still conscious) can prevent fear and ensure appropriate support.

Emotional support and coping mechanisms

Living with cataplexy can be emotionally challenging for children. They may feel embarrassed, frustrated, or anxious about having an episode in public.³

• Open communication – Encourage your child to talk about their feelings. Validate their experiences and reassure them that cataplexy is not their fault.
• Build self-esteem – Focus on your child’s strengths and accomplishments. Help them understand that narcolepsy does not define them.

Peer support – Connecting with other children who have narcolepsy can be incredibly beneficial, helping them feel less alone and providing a space to share experiences and coping strategies. Organizations like the Narcolepsy Network offer resources and support groups for families.

Giving and receiving support

Understanding cataplexy is the first step toward effectively managing it in children. By combining appropriate medical treatments with lifestyle changes, environmental changes, and strong emotional support, children can lead full and happy lives despite the challenges of narcolepsy.