Community Forum Archive
Newly Diagnosed Child & OVERWHELMEDFri, 02/21/2020 - 22:46
Topic: Parents & Caregivers
My 11 year old son was diagnosed in January. How do the parents cope with this? I am in constant fear & stress over my child's safety. I constantly question "is he about to have a seizure?" Every time he goes to take a shower, or use the bathroom, even though I am nearby I am terrified. I am terrified any time he is alone for any short period of time. At night when everyone goes to bed I am terrified. I don't know how to turn this anxiety off/down. I have dealt with so many extremely difficult challenges in my life, but having an issue like this happen to my child is the most incredibly difficult obstacle I have ever faced. I don't know how to handle this stress.
I’m following this thread. My
Submitted by JuliaElizabeth on Fri, 2020-04-10 - 13:53
I’m following this thread. My son was diagnosed with epilepsy in December 2019 after he had two grand mal seizures during his sleep within a week. Since then he’s only had two more. Luckily his type of epilepsy only occurs at night. We’ve purchased the SAMi video monitor and are extremely comforted by this and it has worked great so far. But I’m also extremely emotional and anxious about it all. Would love to hear how the heck parents deal ??? Thanks for postingJulia
Good morning,My 9 year old
Submitted by Kd202000 on Fri, 2020-04-24 - 10:17
Good morning,My 9 year old son was diagnosed with epilepsy yesterday. It hit me like a freight train. He had 2 seizure in a month and prior to this he has none. I do not know how to deal with it as I have been crying since the last seizure which was Sunday. I did buy a video monitor like Julia recommended but I am anxious and depressed all the time. I have been racing the years through my mind of what I could have changed. Was it the braces, was it to much tv or screen time, was it to many late nights. The only way I can deal with this is to blame myself. If Michael reads this, my question to him is if his seizures came back. I know kids can out grow this and I hope to GOD he does.
Ken: I hadn’t answered the
Submitted by Lurch69 on Wed, 2020-04-29 - 20:51
Ken: I hadn’t answered the one question. Whether your son outgrows them or not is speculation and will likely depend in the underlying cause. I’d recommend seeing a neurologist and asking him about the possibility of your son outgrowing them.
Hi,Thank you for posting and
Submitted by Anonymous on Mon, 2020-02-24 - 09:29
Hi,Thank you for posting and we understand this can be very challenging. 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 .You all may want to consider keeping a journal or a diary to help keep track of his seizures, medications, moods and more. My Seizure Diary, can be used to organize his health issues, record medication side effects, develop seizure response plans, and more: 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.pdfEvery 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 Medicals Issues", is a 3 part webinar series focused on ways to equip parents with the 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 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 firstname.lastname@example.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.