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Photosensitive Epilepsy
Wed, 02/19/2020 - 00:41Topic: New to Epilepsy.com
Hello. My 7 year old daughter was diagnosed with photosensitive epilepsy 1year ago. I've never witnessed her have a seizure due to light triggers, but it makes me wonder if she's having nocturnal seizures. From my research, I would say she's having myoclonic seizures in her sleep. She can sleep for 12 hours and wake up the next day yawning the whole day. She also struggles with her behaviour due to being chronically tired.
Does anyone else deal with this that I can ask questions yo as my daughter doesnt quite have the ability to communicate what she's feeling.
Any help is appreciated.
Hi, Thank you for posting and
Submitted by Anonymous on Wed, 2020-02-19 - 10:07
Hi, Thank you for posting and we understand your concerns.If you suspect your daughter may be having seizures while sleeping, it's important that you’re following up with her healthcare team to review this further and if she experiences any change in seizure types/frequency, symptoms,side effects, moods or behaviors, to help determine what individual treatment plan is best for her. You all may want to consider keeping a journal or a diary. My Seizure Diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders,managing medications & side effects, recording medical history, moods, behaviors, triggers,and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with her healthcare team to see if an alert device is an option for her: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding nocturnal seizures and safety while sleeping, here:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.