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Hi,Thank you for posting, we
Submitted by Anonymous on Fri, 2020-02-28 - 09:27
Hi,Thank you for posting, we understand this must have been very upsetting and scary for you all to experience. It’s important that you're continuing to follow-up with your daughter’s healthcare team to express your concerns and if she continues to experience any changes in seizure frequency/types, moods, symptoms, side effects or behaviors, to help determine what individual treatment plan is best for her. 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.pdf . You all may want to consider keeping a journal or a diary to help keep track of her seizures, medications, moods and more. My Seizure Diary, can be shared with her healthcare team an used to organize her health issues, record medication side effects, develop seizure response plans, and more: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’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 , to find support groups, events and programs in your community.