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.

Past experiences holding me back.

Fri, 05/20/2016 - 13:40
My adopted uncle had his first grand maul seizure when he was 5. I was born 2 yrs later and I grew up knowing about epilepsy. Since i can remember it has always terrified me. My uncle could have up to 10 seizures in one day some severe, some mild but they scared me to the point that i would hide, cry, or even get sick to my stomach. I always felt guilty because i did not want to be around him while he was not feeling well because it scared me so much that something could happen. My uncle has never been able to drive or work (that is more of a personal decision). He has never drank and alcoholic beverage, gone away to college or had a serious girlfriend. Now i'm a mom and about 18 months ago my then 6 yr old was diagnosed with epilepsy. He had had two fainting episodes at school and we thought that his heart might be at fault but after an EEG my worst fears came to fruition. The Neurologist, who was on call, came into our room, introduced himself and gave us a diagnosis. I had to walk out of the room while my husband talked to the neurologist. I crumbled. I felt the panic raising and i had to take a walk, take a few minutes to take it all in. I thought about all these things that my baby might miss out on, all the things that i have seen my uncle struggle through. My son has had a bout 24 seizures in all while awake. None of them grand. He has absent, focal, partial loss of consciousness and night seizures. His case is mild in comparison to most cases I've read about but the fact is that as a mom i find myself totally inadequate to help him or comfort him or be there for my son. this post might be silly to some but i need advise, i need to know that i will get past this and i will be able to be there for my son when he needs me the most and that i wont run away crying like i have before. About 3 weeks ago, he had 6 episodes in 48 hrs. We took him to the doctor and now we are doing all sorts of tests. Today we have a 3D MRI sched. and next week he has to do an ambulatory EEG for 72 hrs. Any advice, comments are welcome thanks!

Comments

Please try and not compare

Submitted by just_joe on Sat, 2016-05-21 - 14:42
Please try and not compare your child's epilepsy with your uncles. The tests being done will give the neurologists more information. A short EEG may show electrical impulses that are abnormal. Which is what they are looking for. The ambulatory EEG  can show more since it is keeping track of his brain waves for 72 hours. A lot of the other people posting will give you information they have found by researching sites because they hav children with epilepsy. I use the information from my own experiences since I am the one with epilepsy.A persons personal decision can make a difference on what one does with their life.Your uncles decision was his. Mine was different. I drove my mother crazy did she worry? YES. Did she research to find out more about epilepsy? I rally don't know. I know the doctors talked to her and never answered my questions. So she knew the diagnosis and was given more information. Was she around when I had a seizure? Many times no because I had them at school. Now at home if I was seen by my brother yup. I can remember hearing him saying Hey Mom hes having a spaz attack again. I have always laughed about it. Humor can ease things and yes even today 50 years after that happened I laugh. Mothers learn how to live and deal with things as their children do learning how to deal and live with their epilepsy. Use common sense. I can say personally that I would not be responding to this post if it weren't for a mothers prayer. The neurological team had done everything they could butthey had nothing else they could do. The head doctor over the hospital was the neurologist in charge told me that. He said mothers are wonderful and they don't give up. Relax young lady and research things today are far better then they were when you cried and stayed away from your uncle. The thing that will help you is Your LOVE for your CHILDI hope this helps and he gets his seizures under controlJoeusing your search engine and type in famous people with epilepsy. It might surprise you to see some of the names

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.