November 1st marked the beginning of National Epilepsy Awareness Month so what does this mean? It’s time to learn more about the condition and help raise awareness. The CDC estimates that over 2 million people in the United States suffer from some type of epilepsy. They expect to have over 140,000 new cases reported next year. Unfortunately it is a condition that is rarely talked about even though it is reported that $15.5 billion is spent on medical costs as well as lost or reduced earnings. It is becoming an epidemic as we are seeing more cases of infant epilepsy (1:3200 live births).
I’ll be honest and say I didn’t know a thing about epilepsy until my daughter was diagnosed with it. That is often how we go about our lives. If it doesn’t affect us than we rarely take the time to learn about it. But I am asking you readers to please just become aware of the problem. I am reading more and more stories of parents being sent away from hospitals because a physician is uninformed about infantile spasms (West Syndrome). Every day that infant has a seizure, he or she is far more likely to regress. Rob and I saw it firsthand. When Lola’s seizures began, we saw a light shut off in our daughter. The smile faded, the giggles were gone and the happy aura that would normally radiate out of Lola was simply absent. It was devastating to watch because we didn’t know what was happening. But thankfully we followed our instincts and had Lola checked out. And we are even more thankful that the doctors actually believed our theory. . .that Lola had West Syndrome (a rare form of epilepsy). So now with the knowledge we have, we are talking about our experience. Had a doctor told us we were crazy or had we just blown off the symptoms, who knows what type of mental capabilities Lola would have had taken away.
Therefore I’m going to blog about epilepsy a lot this month. Not only infant epilepsy, but also the other various forms. If you know someone that has epilepsy, take the time to ask them about it. It is such a hush hush condition, but we have to start talking about it. If you hear of a parent with a hunch that their child is having seizures (Caressa – great job!) than please have them contact me right away. I’m no expert and I’m obviously not a doctor, but I am well informed and I am one hell of an advocate. I am passionate about helping other parents because many experts don’t know what infantile spasms look like. I hope to someday start an initiative to get ALL emergency room physicians trained to know what infantile spasms are, what the seizures look like and how to begin treatment. Too many children are going untreated because of the lack of knowledge.
Spread the word. . .share this site.
Know what this video looks like, memorize it because it could help get a child diagnosed.