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The first piece of advice for being diagnosed

4th of July 2012, I woke up with a painful movement in my mouth and face. I don't remember much about being so 7 years old but I do remember saying to myself "I've had many of these things it'll be over very soon.". I thought it was normal to wake up with these facial twitching almost every night never would I think this would be with me till the day I die and flip my life upside down.

Helping the siblings go through this

Going back to when I first started waking up with these I wish I would've known sooner what I had. Having any type of seizure is so scary for little kids especially kids under 10. I know when I was having seizures every night and being sent to the hospital a lot it scared my brother. He was only about 5 years old so his not knowing what was going on with his sister is pretty scary for a toddler. My brother does still get very scared any time anything happens. With my EEGs, he hates being near me, not because he doesn't love me its because he's scared I'm being hurt. When your child is diagnosed we always need to be keeping the siblings and family near the child and help comfort them and reassure them it will all be ok. I know my mom had a very difficult time with me and my brother. Within at least 2-3 years my brother got diagnosed with anxiety (I got diagnosed within a year after my epilepsy started). My brother would stay in his room when he knew something bad had happened. He was too scared to see what type of pain I was in. When most siblings know something is going on with their sister or brother it will break their hearts. To this day my brother still is very anxious about night times because my seizures were all at night. Siblings need to know how to be able to help if they are home alone with the child especially if the sibling is older than the child with epilepsy.

School with epilepsy

Let us be honest here school sucks. Maybe some kids love it but most kids don't. I know I hated high school. Depending on the age at which you have been diagnosed you either are in school or not. I was in school when diagnosed and it was the worst. I never wanted to go to school. School really was never my thing but once I got diagnosed it gradually got worse. I learned to always have a plan B. Never have a plan A without a plan B. Depending on how your seizures are and if you have them during the day or night or even both they will always affect you at school. There is no option that it is going to affect it. I went to a very small private school. There were only 14 kids in my grade. So there was always going to be a problem. All the kids were very judgy and if you had anything different from them you were mostly an outcast. I was always getting bullied. I still somewhat do today but not as much. I would be very aware that kids will be mean and it's just the way it is. I would have people put flashlights in my face and they would ask "will this give u a seizure?". I've had kids harass my boyfriend about it asking if he's ever made me have one. Kids are mean especially high schoolers. If you are a parent reading this please watch out for bullies. I am still affected by the way kids treated me when I got diagnosed.



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