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Be the voice they don't have.

Epilepsy the “invisible” disability.

My 20yr old daughter was just recently diagnosed as having a form of epilepsy called Juvenile Myoclonic Epilepsy. She has been unable to drive herself due to our state law and for safety precautions.

However, we are approaching the time where she can become cleared by her neurologist to get behind the wheel again. But I’m honestly a little concerned, worried as any caring mom would be.

My youngest son and daughter.

Looking back at her development and her behaviors as a toddler and smaller child I think epilepsy may have always been present in her life, but went unnoticed due to my lack of education and awareness about epilepsy.  She would often appear to be “spacing off” or “deliberately ignoring” us as a small child and we have now learned she was probably having mild grade seizures. Therefore, she wasn’t dropping to the floor and jerking but appeared to be alert and seen as either ignoring or spacing out as people do at times.

You’d think I would have been better informed, being that my youngest son had his fair share of seizures quite often, but his were always very obvious.  And it wasn’t until later in life that I learned they can be something as simple as staring off into space.

Anyways, last November she had a very violent seizure, where she did drop to the floor from walking and it was completely not expected and caught everyone including herself off guard. She was “out of it” for quite some time after she stopped seizing on the ground. She doesn’t really remember what happened or how she wound up on the floor. All we could come up with in hindsight, was the fact that she had been walking around the house with this little toy ball that has a flickering light inside it and its motion sensored and she had it with her literally all day that day.

The most scariest thing about all this, is that no one saw her fall so nobody is able to know whether or not she broke her fall by placing her hands down first or how she fell. All we did was hear her mumble something and then a loud thump! And everyone came running. I wasn’t even in the same room but I heard my husband calling her name repeatedly and I came running. The other scary thought was what if she had been home alone?

All her medical tests came back showing she was positive for epilepsy, which was disappointing because we were not expecting that news. They didn’t show any head trauma so I guess that was good.? Since we were unsure how she landed and if she hit her face or skull. We do know she bit her tongue since it was bleeding. Now she has frequent migraines and seems to be bothered by continual flashing lights. She brought a simon says game and can’t even enjoy playing it because as the game progresses the lights flicker more and faster which bothers her.  She’s still one big kid at heart and I feel empathetic for her because the impact this seizure has had.

On a more positive note, I am extremely proud of her for pursuing her new job that she began recently, just in time so she doesn’t have to be laid off and unemployed. I’m proud that she is not allowing this new diagnosis to “cripple” her from moving forward or robbing her from her quality of life. I think it’s very safe to say that all my children are warriors. And we are in this war together fighting different battles everyday.

Anyways, I wrote this article today, to bring some awareness to others who may think their child is spacing off or ignoring them on purpose. Look for early warning signs. Ask your doctor. I’m not implying every single person who spaces out or ignores others is epileptic either, and I’m not a healthcare professional but I am just sharing my experience as a mom with a child who has epilepsy. By the way, she also has mild ticks (jerking twitches). You know your child best, than anyone else. Use your gut instinct, its usually right. I space off at times but I don’t have epilepsy.

Finally, I’m putting all my faith in God to protect and watch over her when she is away from home and at work and when she finally is able to get back to driving. I’m praying and hoping she is healed from ever having it occur again. If God did it for my youngest son, I know he is able to do it for my youngest daughter.

Thanks for listening!

I’d also love any feedback from anyone who may have had that same concern either about themselves or loved ones driving again after a bad seizure and waiting period and what your experience has been.  Hopefully nothing too scary.

Have a blessed day!

 

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