Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Awareness, concentration, tests and how/where to get help
Tue, 10/22/2019 - 02:39Comments
Hi coopercav, Thanks so much
Submitted by Anonymous on Tue, 2019-10-22 - 16:49
Hi coopercav, Thanks so much for posting and we are so happy to hear that your daughter has been seizure free for four years, that’s fantastic news! It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/programs/family-services has offered some great advice and resources in her comment. It is common for people with epilepsy to report having difficulties with thinking, memory & attention. Learn more about challenges with Epilepsy here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd It’s also common for those who are in caretaker 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 care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents and contact your local Epilepsy Foundation at:https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline
Hi coopercav, Thanks so much for posting and we are so happy to hear that your daughter has been seizure free for four years, that’s fantastic news! It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. A key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/programs/family-services has offered some great advice and resources in her comment. It is common for people with epilepsy to report having difficulties with thinking, memory & attention. Learn more about challenges with Epilepsy here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/epilepsy-and-adhd It’s also common for those who are in caretaker 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 care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents and contact your local Epilepsy Foundation at:https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline
I’m a licensed clinical
Submitted by Patriotrehab on Tue, 2019-10-22 - 08:12
I’m a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. Given her extensive history, you may have already had this done at some point and if so, perhaps it’s just time to get it updated because it’s been a number of years. If not, it can definitely help answer some of your questions. Neuropsychological testing that includes processing speed should be done. I would recommend getting this done by a neuropsychologist at an epilepsy center because they are familiar with how specific types of epilepsy patterns affect particular attention, memory, processing speed, and motor control. They also screen for mood and anxiety disorders to see if that can be affecting attention or concentration. You may also be able to express your concerns that the medication causes some of these issues and that while there’s no diagnosis for the OCD or autism spectrum disorder you believe she has some tendencies and “why”. I recommend being specific rather than stating it’s because of an online test though. Some psychologists will also evaluate and diagnose the OCD and/or autism too, possibly beforehand but that won’t answer your questions about the neuropsychological issues like attention and processing speed. Someone from the epilepsy foundation may also respond to you over the next few days with more information. Hope that helps!