Living with Doose Syndrome

Doose Syndrome, also known as Myoclonic-Astatic Epilepsy (MAE), is a rare form of epilepsy that typically begins in early childhood. Living with Doose Syndrome can present various challenges, but with proper management and support, individuals with this condition can lead fulfilling lives.

Medical Management

One of the most crucial aspects of living with Doose Syndrome is effective medical management. It is essential to work closely with a knowledgeable healthcare team, including neurologists and epileptologists, who specialize in treating epilepsy. They can help develop an individualized treatment plan that may include:

• Antiepileptic Medications: Medications such as valproic acid, ethosuximide, and clobazam are commonly prescribed to control seizures in Doose Syndrome. It is important to take these medications as prescribed and regularly communicate with the healthcare team about any side effects or concerns.


• Ketogenic Diet: In some cases, a ketogenic diet may be recommended. This high-fat, low-carbohydrate diet has shown positive effects in reducing seizures for some individuals with Doose Syndrome. It is crucial to work with a registered dietitian to ensure proper implementation and monitoring of the diet.


• Vagus Nerve Stimulation (VNS): VNS is a surgical procedure where a device is implanted in the chest to deliver electrical impulses to the vagus nerve, helping to reduce seizure frequency and severity. This option may be considered if medications and dietary changes are not fully effective.

Seizure Management

Living with Doose Syndrome means being prepared to manage seizures effectively. Here are some important considerations:

• Seizure First Aid: Educate yourself, family members, and close friends about appropriate seizure first aid. This includes staying calm, protecting the person from injury, and timing the seizure duration.


• Seizure Diaries: Keeping a detailed record of seizure activity can help identify patterns or triggers. Note the date, time, duration, and any potential factors that may have contributed to the seizure. This information can be valuable during medical appointments.


• Safety Measures: Create a safe environment by removing sharp objects or potential hazards from the surroundings. Consider using padded furniture or wearing protective headgear if necessary.

Emotional Support

Living with a chronic condition like Doose Syndrome can have emotional and psychological impacts. It is important to seek emotional support for both the individual with Doose Syndrome and their family members:

• Support Groups: Joining support groups or online communities can provide a sense of belonging and understanding. Connecting with others who share similar experiences can be comforting and provide valuable insights.


• Therapy: Consider individual or family therapy to address any emotional challenges, anxiety, or depression that may arise. A qualified therapist can provide coping strategies and support for the entire family.


• Education: Learn as much as possible about Doose Syndrome to better understand the condition and its impact. This knowledge can empower individuals and their families to make informed decisions and advocate for their needs.

Education and Advocacy

Living with Doose Syndrome often involves navigating educational settings and advocating for appropriate support:

• Individualized Education Plan (IEP): Work with the school to develop an IEP that addresses the unique needs of the individual with Doose Syndrome. This may include accommodations, modifications, and additional support services.


• Communication: Maintain open lines of communication with teachers, school administrators, and healthcare professionals. Regularly update them on any changes in the individual's condition or treatment plan.


• Advocacy Organizations: Connect with local or national advocacy organizations specializing in epilepsy or Doose Syndrome. These organizations can provide resources, guidance, and support in navigating educational and legal systems.

Living with Doose Syndrome requires a comprehensive approach that encompasses medical management, seizure control, emotional support, and education. Remember, each individual's experience with Doose Syndrome is unique, so it is important to tailor strategies and interventions to meet specific needs. With the right support and management, individuals with Doose Syndrome can lead fulfilling lives and achieve their full potential.