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.
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.
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.
Learn All About Individuals Living with Doose syndrome
Noah
Intense, but short-lived STORM. Noah’s first seizure was 5/22/09, and it was a grand Mal. Prior to this, he was a normally developing, very active, …
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 …
Balsam
Our journey started when Balsam was two and a half. He was doing yoga in our living room. As he bent himself into downward dog, …
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 …
Kiegan
In 2015 my life changed completely. Kiegan hit his head at the laundry mat causing a concussion and a 7-minute long seizure. The doctors thought …
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 …
Zayne
Zayne is a fun-loving goofy fast-paced boy. Zayne had his first known seizure on July 31st, 2020. In the coming week, things got worse and …
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 …
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 …