Just when you think you know it all, when you think you are prepared and you’ve finally got it all figured out – the world loves to give you an earthquake and make you pick up the scrambled pieces.
When Nova started having seizures, I dove deep into research. I had the answers before medical professionals did. I handled my grief by becoming the best advocate I could be and letting that cover my sadness. I was finally starting to breathe again. I knew what came next. I knew the steps, the routines, what to do in emergencies. I knew how to manage it all.
Then one night, Nova, Denver and I were playing in their bedroom. A laughing fit from Denney turned into her dropping her head over and over- at first, I thought she was being silly. But as it started to take longer and longer for her to lift her head up in between episodes, my gut told me all I needed to know.
Even though Nova had never had a seizure like this before, I knew that that’s what was happening.
I did all of the right things, I got her to bed.
Then I broke.
This was my earthquake.
That night taught me something I never thought I would have to learn. Dravet doesn’t copy and paste. Even with the same exact mutation, the same diagnosis, Dravet written twice on two children’s paperwork-Nova and Denver have been affected by Dravet in different ways. They both have long, hard to treat status seizures. Aside from this, they experience this completely differently.
Denver experiences atonic seizures the most, while Nova has myoclonus that occasionally includes some atonic (drop) seizures. Both seem to have a sensitivity to naps. Naps usually make them both have these seizures, and Nova occasionally will have tonic clonics after naps.
Development. Ugh. This sometimes feels like the hardest part of it all. Last post I talked about Nova’s global delay, she also has a lot of autistic traits. Denver hasn’t shown any signs of that-she makes great eye contact and is on track for speech. Nova didn’t walk until around 20 months old; Denver also isn’t walking yet at 17 months. So, they both have some delay in gross motor skills.
When Nova was the age Denver is now, she also experienced a good chunk of time being seizure free before things started to get crazy. We haven’t got to the things getting crazy timeline yet with Denver, but I am prepared.
It seems like the timelines of their epilepsy journey have been very similar but what they actually experience is so different. They are both warriors, fighting a tough battle. And as for me, I think I am finally getting the wreckage from this earthquake picked up.
Dravet is hard, difficult, and a spectrum. I have never seen two kids with it experience it exactly the same way. Kinda like an earthquake.
Addi Epilepsymama
