Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Daughter newly diagnosed with Dravet syndrome
Tue, 05/12/2015 - 09:19My daughter was just diagnosed with Dravet syndrome. She is 14 months old and when we go outside she has myoclonic seizures. My Dr. told me about these special sunglasses parents use on their children when they go outside. Does anyone know where I can get these? He said they run about $100-$150 and they found them on amazon, but it you know of another web sight that's great too! I don't know what they are called, I messaged him and am waiting for an answer but I thought I would ask on here as well. Also does anyone know where I can get a good cooling vest for her as well, and any other advice would be helpful too! I want to try everything I can for her to have a "normal" life like her sisters. Thank you so much!
Call the 24/7 help line they
Submitted by Anonymous on Tue, 2015-05-12 - 14:22
Call the 24/7 help line they have answers to your question. They would be able to tell you more and even give you some of the sites. I even think this site might have something on it but I am not sure.The people at the 24/7 help line are there to help get answers for parents friends and others needing information.