Community Forum Archive
Worried about my sonFri, 05/01/2020 - 02:36
Topic: Share Your Story
I have a 19 year old son whi has been dealing with epilepsy since he was 12 years old. They are back to not being controlled. Plus in the last few months he has been experiencing new stuff. After he has a seizure he gets up during the postdictil state and walking around. Sometimes he will start to take his hands and clap them like he is aggravated. Or he will grab my hand a twist it. He doesn't sleep like he should. He stays up more than he sleeps and the seizures are coming more frequent. I'm worried that this could result him In going to sleep and not waking up.
Hi, Thank you for posting and
Submitted by Anonymous on Fri, 2020-05-01 - 10:24
Hi, Thank you for posting and for sharing your story. It’s important that you all are continuing to follow-up with your son’s healthcare team to address any changes in seizure frequency, behaviors, (like his postictal behaviors you describe) moods, symptoms or side effects, that you have noticed. Practicing good sleeping habits is important for both physical and mental health. Not enough, or poor quality of sleep is a common trigger for some individuals living with epilepsy. It’s important to address his challenges regarding his of sleep with his doctor’s as well. https://www.epilepsy.com/sites/core/files/atoms/files/Sleep%20factsheet.pdf . Additionally, discussing ways to lower risk for SUDEP with his healthcare team can help him take actions to stay healthy, improve seizure control and guide him to making the safest lifestyle choices. Learn more about questions to ask his healthcare provider by visiting: https://www.epilepsy.com/learn/early-death-and-sudep/sudep/preventing-sudep . Many clinics and offices are now offering telemedicine options for non-emergencies if you’re unable to see his doctor in person currently. Ask the doctor’s if you can schedule a time to talk via phone/ other telemedicine resources you all can utilize, or if they can make any additional recommendations for you all. It may be helpful to keep a journal or a diary to help keep track of your son’s seizures& document how he’s feeling before, during and after his seizures. This can help you all & his healthcare team identify & detect potential-patterns, allowing him to modify his individual treatment plan (if needed), behaviorsand lifestyle, as appropriate. My Seizure Diary can be used to organize health issues, manage medications, develop seizure response plans and more, which can be shared with members his healthcare team. 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 also importantto 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, email@example.com. epilepsy.com/helpline , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates