Adelyn’s Story

THEN

Original FB post: November 13, 2016

Did you know that November is Seizure Disorder/Epilepsy Awareness Month?

It has taken me 8 months to build up the courage to share Adelyn’s story with the rest of the world outside of our family, co-workers, neighbors that she plays with and a few very close friends.  I like to use Facebook to share sarcasm, mom humor, and some positive vibes so this is way outside of my comfort zone and absolutely terrifying to me.  However, Grant & I are slowly starting to realize more and more that THIS IS OUR LIFE and it is not changing anytime soon so rather than hide from it and cry or hold in emotions, or stories of fear or excitement – it’s time to share.  We need to create awareness and not keep this inside anymore because this is our little girl, this is our family.

Grant and I are sharing Adelyn’s story because we know that feeling of hopelessness.  Every time we feel like we have this under control, and are strong enough to handle her next seizure when it does happen – we both end up with the same feelings after.  The rollercoaster of “we got this, it’s ok” to crying because we can never predict when they will happen, or where we will be.

When Adelyn was 18 months old she had her first febrile seizure.  (There should be an extra chapter for you to read in “What to Expect when you are Expecting” because we had no idea these even existed.)

Febrile seizures are extremely common, especially among very young children.  About 1 in 25 children experience febrile seizures before the age of 5 and approximately 40 percent of children who experience one febrile seizure will have a recurrence.

Adelyn had 2 more febrile seizures when she got sick throughout the next year and half.  She would be completely fine and then spike a fever so fast, completely out of nowhere.  We called 911 both times and went to the ER.  We followed up with her Pediatrician every time and talked about doing further tests but Grant & I always decided not to because her seizures were always fever related.  Adelyn’s last febrile seizure was October 2013 and then they were gone.  She would have fevers, but no seizures at all.  We thought she grew out of them, we were in the clear – or so we thought.

This last March 2016 she had a tonic clonic seizure in her sleep that was so convulsive and absolutely horrible to see as a parent.  I am so thankful I was sleeping next to her that night.  This came out of nowhere.  We had been seizure free for the last 2.5 years even with fevers.  When we followed up with her Pediatrician, we all agreed to move forward with an EEG to rule out any seizure disorders.  Her results were not what we expected.  Adelyn was diagnosed with a seizure disorder, and we started medication that day.  We learned from her Pediatrician and Neurologist that she has had this disorder and it wasn’t diagnosed earlier because all her prior episodes were fever related.

We have been trying to learn as much as we can and educate ourselves on the different types of seizures, signs of them and how much they can vary.  Adelyn is on medication twice daily, we have follow up EEG’s and blood work done along with an appointment to see her Neurologist every 6 months.

If through sharing our story and really putting our personal life out there, we are able to connect with one family – it is worth it.

If you know someone who has a seizure disorder/Epilepsy or is a parent of a child who does, please share this with them and encourage them to reach out.  We would love to help support them along the way.

NOW: September 2024

The things I would say to myself back then.  

“It is ok to be scared.  It is ok to say the scary stuff out loud. 

But DO NOT stay small and worry that sharing anything will make others uncomfortable.  Do not sacrifice your own mental health in fear that you might make someone else feel uncomfortable in the moment.  It’s OK that they don’t know what to say or don’t have the answers.  Let it out anyway.  They will support you however they know how to and however they can.  REACH OUT.  There are so many others that feel the same way. 

Ask her Neurologist and Doctors all the questions you need to gather as many resources as you can while trying to calm your fears at the same time.  Do not just listen, make sure they know you will get answers and you will absolutely make sure Adelyn is in the best care possible.”

We tried weening Adelyn completely off medicine the summer of 2021 when she was 10 years old.  She had been seizure free for several years and her Neurologist suggested that we try.  It was a 10 week process but after a 48 hour EEG, we found out that she still has seizure activity at night during her sleep.  Her seizures typically happen within the first hour she is going to sleep and in the last hour before she is waking up.  So taking medication twice daily again was necessary.

Today Adelyn is 13 year old.  It feels like the longest road ever as I write this but also feels like we got here in the blink of an eye.  She continues to take medication twice daily, and although a plan to ween again is not on the near horizon we are very thankful that right now she is seizure free.

Adelyn shares her experience openly and in effort to get more involved, she has become an Ambassador for the Epilepsy Foundation.  Her story and our experience with Epilepsy as a family is how SAME WAVE was started.  It was what we needed and what we hope to provide by supporting others.