Wednesday, January 27, 2016

Social Anxiety as an Epilepsy Parent

I wrote this post on July 30, 2015 and, with some updates, I felt like it was a good time to share it.
I've been thinking about this post for awhile now, especially with all of the activity that we've had going on over the last few weeks. I recently saw this little study posted on one of the Epilepsy Foundation pages that I follow.

I don't know that it's a fact, but I'd like to think I'm not the only human who went from being mostly laid back to suddenly becoming uptight and anxious after welcoming an infant into the world. Those teensy tiny babies create worries and anxieties that non-child-rearing folk might laugh at. You worry about their eating, their pooping and their lack of pooping, their sleeping, their lack of sleeping, their crying and everything in between. The worries and anxieties increase as the little cherubs get older. You still have the same concerns about the eating, sleeping, pooping, but now add on falling down the stairs, swallowing a penny that dropped on the floor, getting stepped on by the dog. Then another year goes by and you also start to think about behavior at daycare, is s/he making friends, the new-found independence, etc.

Now throw in a condition as unpredictable as epilepsy. You drop your baby off at daycare with the fear that he could have a seizure while she is refereeing an argument with the older kids. Will she notice he's not crawling around anymore? What if she doesn't? What if she assumes he's playing quietly in the other room? As he grows older, you fear a seizure on the playground - what if he falls? What if he has a seizure in the classroom? What will the other kids do? Will the teacher notice?

Recently Cameron had his Preschool graduation and I discovered, (admittedly, not for the first time) that while I was excited for him, I constantly feared he would have a seizure during the presentation. In situations like this, I often devise a plan in my head about what I would do if I noticed he was looking particularly unsteady, or if he fell over. In the back of my mind, I'm always planning - if we're in Target, would we rush him to the bathroom to give him the Diastat, or just lay him on the floor in the middle of an aisle? Would everyone stare at us, or would they try to help?

When we're safe in the comfort of our own home, my heart still races when Cam sits still just a little bit longer than normal or if he says he doesn't feel good. Luckily, I know that if he were to have a seizure, he's safe. We know what to do and we can handle it. What the study above describes is the social anxiety and the impact it has on the patient and families, and in particular, the mothers of children with epilepsy. I know that there are so many children with much worse conditions that are fighting for their lives, so I do feel lucky that in the grand scheme, Cameron's epilepsy is not life-threatening, provided all safety precautions are taken.
On January 18, 2016, the above statement somehow doesn't ring as true as it was when I had written it about 6 months ago.  On January 18th, in the comfort of our home, Cameron had a seizure and the "we know what to do" went out the window because Cam's emergency medicine did not work. For the first time, Shawn had to call Dartmouth to get permission to administer a second syringe of Diazepam and was given orders to call 911. At this point, sick to my stomach and nearly 20 miles away, I drove (safely) to the Emergency Room in Keene to meet Shawn and the ambulance. I had no idea what I was going to walk into. I didn't know anything other than that Cam's seizure hadn't stopped and they were rushing him to the hospital via ambulance.

Thankfully, just prior to my arrival, Cam's breathing normalized and his oxygen levels remained at 98% - they had warned Shawn that they may have had to intubate him due to all of the muscle relaxers slowing down his breathing. When I walked in, I leaned over and touched him with my cold hands, which caused him to flinch. The doctor was happy about that, because he had previously been unresponsive. After about 45 minutes (from the time that it started around 9am), Cameron's seizure finally stopped. The details leading up to Cam's eventual discharge around 3pm are unimportant at this point, because our boy is okay and that's all that matters.

I had not felt fear like that in my life prior to that drive to the ER and waiting for Cam to wake up. Sitting in the same ER where Cam's best friend, 5-year-old Caellan, had been just two weeks prior, knowing his mom had been feeling a similar heart-wrenching, gut-gripping fear, and knowing that Caellan did not get to go home, left me feeling completely helpless, numb and paralyzed. The thought still brings me to tears.

Shout out to Shawn, because while everyone was sending me texts and love, he was the one shattering in the background helplessly calling 911 and waiting for the ambulance to arrive. <3
It's been a tough start to 2016 for us for more reasons than just the end of an 8 month, 14 day seizure hiatus. I'm hopeful that the next few weeks and months bring less exhausting moments and more, generally relaxed time with our friends and family. Thank you again to all of you who shared well wishes, hugs and prayers last week. They all mean the world to us!

Don't worry about a thing, cause every little thing is gonna be alright.


  1. Thank you for sharing your story. My daughter has epilepsy. Your story is very true to my own experiences.

    1. I'm so glad you can relate, as not many people can. <3