Sunflower Syndrome - Epilepsy

What is Sunflower Syndrome Epilepsy?

Sunflower Syndrome (also referred to as Self-induced Photosensitive Epilepsy) is a rare epileptic disorder characterized by a distinctive seizure that manifests itself in a highly stereotyped physical behavior. Seizure types associated with Sunflower Syndrome include absence seizures and generalized tonic-clonic seizures.

How Is Sunflower Epilepsy Treated ?

There have not been any clinical trials to investigate the effectiveness of treatments for Sunflower syndrome. For this reason, it is unknown if any anticonvulsant medications or treatments are particularly effective.

Some individuals with Sunflower syndrome and their parents report that providing shade from bright light (via a baseball cap, tinted sunglasses or welder's glasses) can help reduce the frequency of hand waving episodes. Other individuals report that focusing on specific tasks while in the presence of bright lights can reduce the frequency of hand waving.

What are other issues Patients face ?

The impacts of Sunflower syndrome have not been fully explored. Because individuals with Sunflower syndrome experience brief disruptions in consciousness, hand waving episodes can impact one's ability to attend and learn. Furthermore, these disruptions in consciousness may pose a safety risk depending on the child's activity at the time of the hand waving episode. Children who experience tonic-clonic seizures are at additional risk of injury at the time of those seizures.

Some patients also report experiencing anxiety, which may in part be caused by the inability to prevent or control hand waving episodes. Children with Sunflower syndrome may also experience added stress from clinicians, family members and friends who believe that the hand waving episodes are self-induced and under conscious control. Children often report that they are told to "just stop" causing themselves to have seizures.

Stigmas Surrounding Sunflower Syndrome

Sunflower syndrome was originally described as a self-induced photosensitive epilepsy. However, the "self-induced" designation may be inaccurate.

It was initially believed that individuals with Sunflower syndrome were consciously inducing seizures for attention or pleasure. This belief created a stigma around the disorder. As a result, people have adopted the belief that individuals with Sunflower syndrome can control their hand waving episodes.

Info above for this article found on The Mass General For Children website (massgeneral.org) .

I want to thank Yarrow on Twitter social media , while attending a Epilepsy Zoom chat , she brought to my attention Sunflower Syndrome , i had never heard of it before .

Posted Nov. 19, 2022