Monday, October 15, 2018

Seizure Aftermath: The Other Shoe has Dropped


Isn't it strange how time works? August 19th is as fresh in my mind as ever, but I can't remember what I had for lunch today. I have flashbacks to my daughter's seizure on that seared-in-my-brain day. I see her hands clenched near her neck as she bucked and convulsed. I see the ambulance flying towards us on the shoulder of the highway. I see the paramedics loading my baby onto a stretcher. Now I know why people say that watching someone have a seizure is almost as traumatic as actually having one.

Almost two months have passed since that day. She has not had another seizure. In the intervening weeks, I was able to convince myself that the episode was a one-time occurrence, a fluke. She had an EEG on September 7th. It took 3 1/2 weeks to get the results and even then it was only because I called (I'm assuming the results sat around for a bit). Because it took so long, I included it as evidence in my "everything's fine" analysis. I mean, if the results were abnormal, they would've rushed to let us know, right?

The results were indeed abnormal. When I found out, I became unhinged. The neurologist's office wouldn't provide any other details about the EEG results until we came in for a consultation. They referred us back to our pediatrician's office for any questions we might have. The pediatrician's office advised us that they couldn't answer any questions. I may have shrieked into the phone at one point - it felt like no one was being as helpful as I would have liked. Initially, our consultation with the pediatric neurologist was scheduled for November 5th. I couldn't imagine how we'd wait that long. Fortunately, there was a cancellation and our consultation was rescheduled for today.

My daughter has epilepsy. I'm still getting used to saying that. My mind is spinning. She's having a lot of trouble digesting it as well. I spoke to her counselor at school so that she'd know what was going on.We are trying to keep things as normal as possible.

Here's what we know at the moment:

  • The EEG showed spikes that shouldn't be there. They represent a lack of stability in the electrical activity in her brain.
  • She is scheduled for an MRI on November 5th. The MRI is needed to make extra sure that the seizure was not caused by a tumor or that sort of thing. We are expecting normal results here.
  • The condition is genetic.
  • A major trigger is a lack of sleep. I suspected this already and have been pushing her to get more sleep. We take her phone away at night. The neurologist stressed this over and over: my daughter must get 9 hours of sleep per night. She should not look at any electronics prior to bedtime. I know she is very frightened of having another seizure so I'm hoping that is enough of an incentive to get the sleep she needs. Honestly, she needs that sleep either way - her body is growing and changing so fast that she needs all the down time she can get. 
  • The tentative diagnosis is: Benign Epilepsy with Centro Temporal Spikes.
  • There is a good chance she will outgrow this condition. 
  • Without medication, she has a 60%+ chance of having another seizure. The odds just sort of snowball from there. The doctor described a succession of seizures as being like kindling that builds towards a fire. 
  • The neurologist is recommending medication. There are two from which we can choose, so we have some homework to do. Each has slightly different side effects so we just need to weigh our options. 
I still need to read and digest the folder full of information I received today. I need to submit a Seizure Action Plan to the school. We have to continue to make sure she stays safe - no swimming alone, for example. The kid and I are headed to Orlando in December (this will be her Christmas gift). Dr. E confirmed that we can still do this. Again, we just have to focus on making sure she gets enough sleep. He warned that if she doesn't get enough sleep, the rides could certainly cause a seizure.

So, that's what we know for now. My daughter is scared but we are doing our best to get through this as a family. The meds will likely require routine labs and that's actually the part that upsets her the most. Having her blood drawn terrifies her. I am not sure what I did wrong (as a parent) that she ended up with this goofy fear but seriously, she will avoid even the tiniest bit of discomfort, even if it only lasts a second or two (and is good for her in the long run).

Today was pretty surreal. We answered a litany of questions (even down to the kid's weight at birth). It was kind of weird being asked if my daughter is pregnant. "Ew," she said in response to the nurse's question. I was asked again when I made the appointment for the MRI. Okay, people, one trauma at a time, please. I cannot contemplate teen pregnancy at the moment.

Another little bit of good news: her highness is incredibly close to hitting the 5 foot mark. This has been a goal along - to be 5 feet tall. Honestly, she can achieve all the height she needs with her hair. It's always fun to watch the nurses try to pat it down so that they can get an accurate height measurement.

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