Seizure Detection Wearables, etc.

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My son is 5 and has had two tonic clonic seizures. We suspect it is due to a DNET. His seizures have been at night so we are, of course, scared of SUDEP. I've looked into seizure detection watches, mattress sensors, and video monitors. I've spent hours researching all the options and settled on one item in each category. So far I've only purchased and received the video monitor and am sadly disappointed with it. I'm beyond the return window so I can no longer return it. I'm ready to upload the prescription for the Embrace, but the cost is very high and the monthly subscription literally makes my blood pressure rise - not to mention requiring the paired device to be within 30 feet of the watch, the lowest cost subscription only alerts one carer, and this watch has only one function. Before I make the same mistake with the other purchases, what are your experiences with the devices you have used? Does anyone have experience with something like an Apple watch or Samsung device and an associated app?

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Thu, 2020-02-06 - 09:45

Hi, Thank you for posting and we understand your concerns. It’s important that you all are continuing to follow-up with your son's healthcare team to express your concerns and if he experiences any changes in seizure types/frequency, side effects, moods, behaviors and symptoms, to help determine what individual treatment plan is best for him. We understand that talking about SUDEP is tough and can feel scary. Discussing ways to lower risk for SUDEP with his healthcare team can help you take actions to help him stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep As you know with there are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device section of the website with his healthcare team, who can help you all determine which alert device would be best for him and resources available that can assist with cost, here: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alertsFor more information regarding seizure safety at night please visit, https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping You may also want to consider keeping a journal or 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 his doctors. 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 taking care of yourself 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.

Hi, Thank you for posting and we understand your concerns. It’s important that you all are continuing to follow-up with your son's healthcare team to express your concerns and if he experiences any changes in seizure types/frequency, side effects, moods, behaviors and symptoms, to help determine what individual treatment plan is best for him. We understand that talking about SUDEP is tough and can feel scary. Discussing ways to lower risk for SUDEP with his healthcare team can help you take actions to help him stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep  As you know with there are many different devices that can help detect seizures and notify someone to help respond.  Review our seizure alert device section of the website with his healthcare team, who can help you all determine which alert device would be best for him and resources available that can assist with cost, here: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alertsFor more information regarding seizure safety at night please visit, https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping You may also want to consider keeping a journal or 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 his doctors. 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 taking care of yourself 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.

Hi, Thank you for posting and we understand your concerns. It’s important that you all are continuing to follow-up with your son's healthcare team to express your concerns and if he experiences any changes in seizure types/frequency, side effects, moods, behaviors and symptoms, to help determine what individual treatment plan is best for him. We understand that talking about SUDEP is tough and can feel scary. Discussing ways to lower risk for SUDEP with his healthcare team can help you take actions to help him stay healthy, improve seizure control and guide you to making the safest lifestyle choices. Learn more about questions to ask your healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep As you know with there are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device section of the website with his healthcare team, who can help you all determine which alert device would be best for him and resources available that can assist with cost, here: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alertsFor more information regarding seizure safety at night please visit, https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping You may also want to consider keeping a journal or 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 his doctors. 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 taking care of yourself 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.

I hope you find the solution

Submitted by andr8 on Mon, 2020-03-02 - 00:20

I hope you find the solution to help your son. I'm actually a mechanical engineer in Pittsburgh working on technology to give people warning before they lose consciousness or collapse because of a seizure. We're a small team of four people: a physician, neuroscientist and biomedical engineer. Your responses to the following questions would really help us and hopefully help people like your son in the future:What is the hardest part about seizures for you?Tell me about the last time a sudden seizure affected you?What are the solutions you have tried?What don't you love about the solutions you tried?Thank you,LILO Team