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.
What is Doose syndrome? - Doose Syndrome Epilepsy Alliance
Doose syndrome is a rare form of childhood epilepsy that usually begins between the ages of 1 and 5. The median age at onset is around 3 years old. Children are usually developing normally before onset. Currently, the cause of Doose syndrome is still undetermined though genetic links are suspected. Outcomes for children with the condition vary.
What Are The Seizure Types - Doose Syndrome Epilepsy Alliance
Doose syndrome is a complex seizure disorder that presents as a mixed bag of generalized seizure types. The myoclonic-atonic seizure (also called drop seizure or drop attack) is the core seizure type associated.
Basic Information - Doose Syndrome Epilepsy Alliance
Myoclonic-atonic Epilepsy (MAE), or Doose syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication (Refractory). For this reason, it can be difficult to treat. Doose syndrome is idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate…
What are the Treatment Options? - Doose Syndrome Epilepsy …
Because children with Doose syndrome have Generalized (Happening across the whole brain at the same time) instead of focal (starting in one specific place in the brain and then spreading) surgical interventions are typically considered later if …
What is the Long Term Prognosis? - Doose Syndrome Epilepsy …
The long-term outcome for children with Doose syndrome is highly variable. The spectrum ranges from complete remission and normal intellectual development to therapy-resistant epilepsy which can result in mild to severe developmental delay.
Parents and Caregivers - Doose Syndrome Epilepsy Alliance
Some of the most effective treatments for Epilepsy, and in particular Doose syndrome, are medically supervised diets. Learn more about dietary treatments.
How is it Diagnosed? - Doose Syndrome Epilepsy Alliance
There is no definitive test for Doose syndrome. Instead, it is diagnosed based on a cluster of clinical (types of seizures witnessed by parents and medical professionals), onset, and EEG (Diagnostic Test used by Neurologists) findings.
Surgical Options - Doose Syndrome Epilepsy Alliance
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.
Non-Convulsive Status Epilepticus - Doose Syndrome Epilepsy …
Non-convulsive status in Doose syndrome can also be subtle and very difficult to detect without an EEG. Only a very careful history of an unexplained change in function or behavior can lead a treating doctor to suspect NCSE and to obtain an EEG.