Okay, folks…let me tell you. I love to learn – you probably knew that…but I REALLY love to learn. Over the past few months I have had the pleasure of meeting, and learning from, a most amazing mama.
You met her son Garrett on Day #157. At that time I didn’t really know much about epilepsy. I also didn’t know much about Garrett’s incredibly funny mama. Well – we’ve become friends and she is a most remarkable person. That, I know, is true.
One afternoon we stood in a cold parking lot talking about epilepsy – because, well, honestly I don’t know much about the disease/disorder (it’s viewed as either, depending who you talk with). What I know about epilepsy came from television or from the movies. I was asking questions about her sweet son when she said to me, “Well it began with absence seizures.”
Hold up…what? Different types of seizures exist? She went on and it was like she was speaking Greek. I finally said, “I have no idea what you are talking about…can you start back at the beginning.” You must know that I am always willing to admit my ‘not-knowing.’ On a personal level I think this is one of the most important qualities of being human. Knowing you don’t know, knowing it’s okay not the know, knowing how to ask, and then…knowing how to listen. This is certainly an area that I did not know much (if anything) about.
She told me about absence seizures…where a child can be talking and then they simply stop, look away for a few seconds, and then come back. Hold up. I could only think of Tucker…getting lost or ‘stuck’ mid-sentence. I asked her to send me more information. She sent me this video. WATCH THIS!!
Trust me, during my next conversation with Tucker I positioned myself directly in front of him to witness his ‘freeze’ moments. He didn’t exhibit any of these qualities…but I was still amazed by this video. I showed my husband the video. He also admitted not knowing. We watched it again…and again. I knew I needed to know more. I knew we all needed to know more.
There is a definite link between autism and epilepsy, this I know. In fact, it is estimated that nearly 1/3 of folks with an ASD also have epilepsy. That’s pretty huge. So, I asked my most intelligent, beautiful friend to write something today…
Autism can take us in many different directions depending on the quirks, perks, and challenges it presents in our lives. Occasionally, it can also overshadow the existence of other issues and suspicions. [My experience was actually reversed. The Autism I suspected in my baby was dismissed early on and then overshadowed by the onset of epilepsy at age 16 months.] Either you know this statistic well because it applies to you or you’re shocked by it because it does not;
It is estimated that 1/3 of individuals with Autism Spectrum Disorder also have Epilepsy. Yes. A third of people with Autism also have seizures; typically recurring seizures and beginning at any age.
Autism Speaks dedicates a portion of their website to educating people on this particular issue. As we look at the co-occurrence of two neurological issues, it is not so shocking that it exists at this rate. There is even some consensus that Autism and Epilepsy are derived from the same brain abnormality and a growing body of research investigating whether they are, in fact, mutually exclusive diagnoses versus one very large long spectrum of the same neurological disorder. Crazy Right?
November is Epilepsy Awareness Month. It’s the perfect time to make everyone aware of the prevalence of the Epilepsy itself! A few facts the Epilepsy Foundation’s Iowa Office shares are shown here:
Similar to Autism, Epilepsy is also seen to exist on a spectrum. The impact it has on one’s functionality, severity and frequency of seizures, difficulty in medical management and so on vary across the board. Types of seizures also show great variance. Not all seizures look like the stereotypical movie scene. Absence seizures are brief and mostly present as a short period (15-20 seconds) of “staring off”. Beyond this, seizures can be as “simple” as eyes twitching, head dropping, lip smacking, arm jerking, leg stiffening all the way up to the full-body convulsions. Only an EEG can definitely determine whether abnormal electrical brain activity is occurring and is, in fact, seizing. For more comprehensive information on Epilepsy and seizure types, refer to the National Epilepsy Foundation.
Don’t be frightened by the statistics. Information is power. If you have a true concern that epilepsy is an issue you’d like to investigate further, you should contact your medical provider. Questions to help guide you in your inquiry can also be addressed to the Epilepsy Foundation’s Iowa staff. Henry is the Eastern Iowa Services Coordinator working from Iowa City and can be reached at (319) 359-8682. Roxanne Cogil is the Director of Iowa Epilepsy Services working from Des Moines and can be reached at (515) 238-7660. The Foundation also has a social media presence and can easily be found on Facebook and Twitter where you could connect with others.