Community Forum Archive

Seizure Detection Devices - Is there anything out there?

Mon, 12/16/2019 - 12:54
Hi, We have a 2yo that has focal seizures where he zones out, his lips turn blue, and his breathing is irregular. It is currently being treated with Keppra, Trileptal, and now Onfi. Our biggest concern is when he is sleeping as his seizures don't involve movement and wouldn't typically wake us up. He has an Owlet (Pulse Ox) that we have been using since birth as his seizures typically cause heightened heart rates and low O2 levels. But he is growing out of the Owlet and we are hoping to find something out there that we can use now. I'm not sure if our insurance would cover a medical-grade pulse ox at this point...We have been looking for a seizure response/assistance dog but we know that this could take a while. Any recommendations or advice would be greatly appreciated.

Comments

Hi, Thank you for posting.

Submitted by Anonymous on Tue, 2019-12-17 - 09:20
Hi, Thank you for posting. There are many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet with his doctor’s, to learn what’s available and if the devices would meet your needs. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information on seizure alert devices, please visit: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alertsSome insurance companies will help cover the cost of these devices. You can also work with organizations like Danny Did: https://www.dannydid.org/  and the Chelsea Hutchinson Foundation: https://chelseahutchisonfoundation.org/Prior to making a decision about a seizure alert or response dog, it’s important that you all talk with your son’s healthcare team. They can review the pros and cons and how to find a reputable service dog provider. To find a list of places that train service animals for individuals-with seizures, visit:  https://www.epilepsy.com/epilepsy-seizures-247-helpline-resourcesIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.https://www.epilepsy.com/living-epilepsy/parents-and-caregivers  It can 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  Or 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, contactus@efa.org. epilepsy.com/helpline

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