Doose Syndrome Epilepsy Alliance | Joining Forces to Create Change

Doose syndrome is a rare catastrophic form of early childhood epilepsy with no known cause or cure. We exist to improve quality of life and provide support for families.

Myoclonic Atonic Epilepsy

What is Doose syndrome

Doose syndrome is a rare form of early childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is 3 years old. Children are usually developing normally prior to onset. Currently, the cause of this condition is still undetermined though it is believed to be genetic.

What are the seizure types?

How is it diagnosed?

What are the treatment Options?

What is the long term prognosis?

Doose Syndrome

How do I find support?

The constant care, stress, and worry associated with a child living with Doose syndrome can severely impact the person and the family’s quality of life including siblings. Parents need to develop a network of support beyond just their medical teams.

Social Support

One of the chief means of support comes through interacting with other parents. Learn more.

Financial Support

Doose syndrome can carry a significant financial burden. Explore some of the available resources.

Educational and Behavior Support

Doose syndrome can affect the developmental process, until/unless seizure control is achieved. Children who were normally developing with peers may fall behind in their development.

Myoclonic Atonic Epilepsy

What are the Treatment Options?

Treatment options for Doose Syndrome include a variety of medications, medically supervised diets, in some cases surgical interventions, or alternative treatments.

Pharmaceuticals

Our children are typically first treated with pharmaceuticals. This often starts before the diagnosis of Doose syndrome, and there are a few important things to know about it.

Dietary Treatments

Some of the most effective treatments for Epilepsy, and in particular Doose syndrome, are medically supervised diets. Learn more about dietary treatments.

Surgical Options

Surgery is typically a later option for Doose syndrome children. Because the syndrome is considered a generalized disorder (entire brain simultaneously) many surgical interventions are not available as they only work for focal seizures.

Alternative and Complementary Treatments

we have listed the following in ranked order of how often they have been tried by our community through an online survey that was conducted through our Facebook group.

Learn All About Individuals Living with Doose syndrome

Adonijah

Adonijah (Ado), the youngest in the Family, was born a healthy boy here in Kampala-Uganda at St. Francis Hospital – Nsambya on September 20, 2018. ...

Oscar

Oscar had his first seizure a few weeks after his 3rd birthday, a week later another, doctors said they didn’t think he was having seizures ...

6 Year Old Girl

Small head nods, almost imperceptible at 2, became more significant over months. By 2.5, was having head drops. At most, sets of 3, 6-7 times ...

Oliver

Ollie had his first seizure in February 2017, at 2 years old. It started with one, and then quickly escalated to 80 mixed seizure types ...

Drew

The first seizure was at 3 yrs 1 month. My 5 yr old daughter asked me while I was in the kitchen working “Mommy…. Why ...

Sal

Sal’s journey began at 10 months of age. We were seeing him get “startled” a lot. We later learned they were Myoclonic seizures. Many months ...

Bennett

Mother has Juvenile Myoclonic Epilepsy. Bennett was exposed to Valproic Acid during pregnancy. Rough birth, ICU for 1 week. Then, generally slower to develop, first ...

Paul

Paul was a healthy, normal 3.5 year old boy who had just become a big brother when he had his first seizure. I got a ...

Samuel

Samuel

After a totally normal first year Samuel had his first seizures just hours after his 1-year vaccine. They started as drop seizures and long tonic-clonic ...