Community Forum Archive
My 2 year oldSun, 03/22/2020 - 10:35
Topic: Parents & Caregivers
Hello all, My two year old son was recently diagnosed with epilepsy, so far we've only witnessed absence seizures. Because epilepsy runs on both sides of the family, she doesn't know what the future looks like for him. Whether he will grow out of them or if he will develop convulsions in addition to the absense. Living with all this uncertainty is really making me anxious. I feel like I should prepare for convulsions but idk where to even start and I'm scared to death what if he has one while at the sitter?
Hi,Thank you for posting and
Submitted by Anonymous on Mon, 2020-03-23 - 09:42
Hi,Thank you for posting and we understand your concerns. Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy . It’s important that you all are continue to follow-up with his healthcare teams to discuss your concerns and if he experiences any changes in seizure types/ frequency, side effects, symptoms, moods or behaviors, to determine what individual treatment plan is best for him. You all may want to consider keeping a journal or a diary to help keep track of his seizures,medications, and more by using a diary or a journal. My Seizure Diary, can be used to organize his health issues, record medication side effects, develop seizure response plans, and more, which can be share with 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 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 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. https://www.epilepsy.com/learn/managing-your-epilepsy/managing-your-child%E2%80%99s-epilepsy . 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 . 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