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How To Deal

Thu, 01/23/2020 - 21:06
Hi everyone- My son suffers from focal seizures and his symptoms change with every episode. I am just reaching out to see how other parents/caregivers find strength to help care for their loved one(s) that have epilepsy? Sorry for the brevity of this post, I am new here!

Comments

Hi, Thank you for posting and

Submitted by Anonymous on Fri, 2020-01-24 - 09:13
Hi, Thank you for posting and we understand this can be very challenging.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.pdfYou 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. Every parent is different in how they cope with their child's epilepsy. It is important to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. 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  The "Toll of Caregiving in Parents of Children with Medical Issues," is a 3 part webinar series focused on way to equip parents with tools to help them navigate stressors when caring for a child with a chronic health condition, here: http://ring14usa.com/index.php/2019/04/29/toll-of-caregiving-webinars/Additionally, you all may 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, setting reminders, recording medical history, moods, behaviors, triggers, and other personal experiences, that may affect seizures and wellness, which can be shared with his healthcare team.

Is he on medicine? 

Submitted by jesspeeples118 on Sat, 2020-01-25 - 23:12
Is he on medicine? 

Yes- currently on Onfi and

Submitted by amlar521 on Sun, 2020-01-26 - 19:50
Yes- currently on Onfi and Briviact. Medicine helps, but he still has the breakthrough episodes. 

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