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My little one is just shy of a year and he just went for an eeg last week. How do I cope with waiting for the results? How do I cope with not being able to stop the seizures? I'm a young parent and a first time mom. The unknown of when his next seizures will be or how it'll affect him scares me a lot.
The epilepsy has affected my short and long term memory. I have some college courses that i don’t even remember taking. I have trouble remembering numbers. I always carry a notebook and take pictures of what i’m doing. Coming out of a seizure is different for everyone and will usually depend on the type and severity of the seizure. Most people experience lethargy, muscle pain/soreness, headaches, dizziness, mood swings, depression, etc… recovery can last anywhere from a couple hours to a few days. I’ve been down for as long as three days and experienced complete amnesia for almost an entire day. It can be frightening. There are an incredible number of restrictions and other things to watch out for too. Like no allergy meds or cold meds, they contain compounds that trigger seizures. No open water, no swimming unsupervised, ever, for life. It’s really overwhelming at first and can be draining, but it just becomes normal life. He will get frustrated. He will have mood swings. He may have emotional problems. He could develop PTSD from the seizures. I’m sorry if this all sounds hard and overwhelming. I’m not trying to bring you down or scare you. Do some research, make sure your childs neirologist is a specialist in epilepsy. Not all of them are. Preferably an epileptologist. Just love on your kid, hold them, make sure they know they’re safe, and keep being a good mom. You’re trying to understand and that’s what a good mom does.
@A MyEpilepsyTeam Member
I’m not sure exactly what type of seizure it is but doctors say that a lack of oxygen at birth is what caused them. I do know that they start on the left side of my brain and spread over to both sides. I had auras as a toddler but didn’t have my first seizure until I was 10 years old. My seizures will last 4 or 5 minutes and I usually just stare off into space. My mom has told me that I sometimes would shake and fall on the ground. It affected my short term memory bad. I can remember several things from over 30 years ago, before I had seizures, and not be able to remember what happened yesterday. So basically from the point I started having seizures I no longer could remember much. My mom helped me through school and read every book we read in class. I never need help when I wake up from a seizure. I can’t even tell after I have a seizure that I even had one. When I was a kid I could be playing a sport and when the game was over my coach would tell me that I had a seizure in the middle of the game. I wouldn’t have even known if he didn’t tell me. I was able to play just as good after the seizure than before. Same with work now. I’m out for few minutes then I get back up and get back to work.
Well, the bright side of the eeg is you get results alot faster and they don't use needles anymore. Instead of worrying about the seizure, get ready to show your love and support because that's what I wanted to see after my seizures. The effects of seizures differ so much but there's over three million of us in the US so I'm sure you'll find someone here with the same kind as your son.
In a nutshell, I started out with short minor seizures. They got stronger and longer but I had big gaps between them. 22 years ago I got tired of having to worry where my next seizure was gonna happen so I had a temporal lobectomy. I've been seizure-free ever since.
Good luck to you and your son!
I'm sorry I'm going to sound crazy with having a million and 1 questions. What type of epilepsy do you have? Did it affect your short term or long term memory or both? What helped you the most when you came out of a seizure? Again I'm sorry I'm learning as this is happening and a lot of the time the Dr's speak in a way that I don't understand and they shove off my questions because I'm a young parent
@A MyEpilepsyTeam Member
I understand how you feel. I had my first seizure when I was 10 years old so I grew up having seizures. He will probably not learn things very fast. Before I had seizures I had the best memory but after I had my first seizure I no longer could remember anything. Other than that I was a great athlete as a kid. I was 100% physical and healthy. I still have seizures to this day and they never have caused me any pain. I’ve never known after a seizure that I even had one. The only way seizures affected me as a kid was learning and remembering. I was 100% physical and a great athlete. I’ve now had seizures for 30 years and that’s still the case. So each seizure shouldn’t affect him more and more.
How do you cope with the guilty and embarrassed feeling associated with asking for rides everywhere?
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