Here we are, halfway through Epilepsy Awareness Month. If you follow James on Facebook, you’ve probably already seen these epilepsy facts. For those of you that don’t follow James Facebook page (and I don’t know why you wouldn’t), Stacy has been posting these pictures every day this month and will continue to do so throughout November. This post will include days 1 through 15 and I’ll plan to post days 16 through 30 on the 30th.
Thank you, Candlelight Concert for Epilepsy Awareness, for creating these images to help raise awareness about epilepsy.
Day 1
James was officially diagnosed with epilepsy when he was 5 months old, but we believe he had 1st seizure the Tuesday before he was born. Stacy was at lunch with her folks when all of a sudden, she started feeling a bunch of kicks in her belly. It was very strange because James had been very laid back and didn’t move or kick at all throughout the pregnancy. As a matter of fact, the ultrasound tech often had a hard time getting him into the position she wanted him in to take measurements. It wasn’t until after he was born that they discovered he had a stroke in utero, maybe as early as the first trimester.
Day 2
James started out having bicycling seizures. We were told that if we can’t stop his legs, he is having a seizure. His seizures turned into Infantile Spasms where he would just throw his body front or back. Now we are dealing with fencing seizures, which are over in just a few seconds, but he can have up to 50 a day!
Day 3
Stacy likes this fact because she remembers hearing the opposite when she was younger. In our case, James never closes his mouth so there is nothing for us to worry about.
Day 4
James was officially diagnosed with epilepsy at 5 months old when he was diagnosed with Infantile Spasms, a type of epilepsy.
Day 5
We have had some control over James’ seizures with various treatments, but then he changes it up and starts a new kind of seizure. Sometimes a treatment that was working seems to stop working. It’s as if the seizures are stronger or become more resistant to whatever treatment we throw at them! We are looking forward to trying CBD oil soon.
Day 6
James was diagnosed with cerebral palsy (CP) at birth due to a stroke he had in utero, so he suffers from both CP and epilepsy!
Day 7
Since James was born in 2009 and we became “members” of the special needs/cerebral palsy/epilepsy communities, Stacy estimates that we have lost about 15+ kids under the age of 10 to epilepsy or Epilepsy related problems. Stop for a minute and think about that. In six years, we have known 15 families that have lost a child to epilepsy. That’s more than 2 kids a year. Now think about that on a global scale.
Day 8
James is non-verbal so he can’t really express how he is feeling, but we think that James does feel depressed some days. He gets so quiet and just stares or sleeps.
Day 9
3 million. And that is just in the United States.
Day 10
You can have a single seizure and not have epilepsy. You need to have at least two seizures to be diagnosed with epilepsy.
Day 11
300,000!
Day 12
Traumatic brain injuries (TBI) can cause epilepsy. In James’ case, it was more than likely the stroke, which is a non-traumatic brain injury (NTBI), that caused his epilepsy.
Day 13
Sad, but true. There is no cure for epilepsy…yet. All we can do for now is help the symptoms. Some might become seizure free, but most will never utter those words.
Day 14
James is not contagious. He is a cute 6-year-old, looking for love and lots of kisses.
Day 15
We have met so many wonderful people around the world because of James’ diagnosis.
