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I’m Grateful It’s Been More Than 100 Days Since My Son’s Last Seizure

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Never in a million years did I ever think my son, Dominic, would have epilepsy. I thought I had a pretty good “handle” on the challenges that come with his autism until he had a grand mal seizure in June 2015. I was hoping and praying he would just have the one seizure and that would be it. Little did I know that there would be four more seizures (not grand mal) with the most recent one happening at the end of June of this year.

Do I ever fully relax when Dominic is at school even though they have an emergency plan for him? Nope. Do I let him stay with a babysitter? Nope. I am in constant “high alert” status when he isn’t with me. It’s really, really hard not to be. Believe me, I’ve tried.

Other relevant stories:
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The only thing I knew about epilepsy prior to Dominic’s first seizure was that you have to put the person on their side. I had presence of mind that day in June 2015 to at least do that. I wish I could go back and thank the 911 operator I talked to. I was so stressed out because a few times I didn’t think Dominic was breathing. She told me to count in between his breaths until the ambulance got to our house. The paramedics and the EMTs were so great with him and the hubby and I. I admire them, and I know I couldn’t do that job!

I had no clue that children could be diagnosed with autism and epilepsy. “In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence,” according to a study published on the National Center for Biotechnology Information. Who knew?

I wonder if Dominic will be able to get his driver’s license? I’ve asked him, and he says he wants to learn how to drive. Do I tell him no? Is it possible? Will having epilepsy prevent that? He is on a pretty strong dose of anti-seizure medication.

This morning, in the rush to get both Dominic and the hubby out the door, I forgot to give Dominic his anti-seizure medication. Ugh. That is like the second or third time I have done that since this new school year started! 

I sent a message to Dominic’s teacher as soon as I realized I hadn’t given him the medication then I drove down to the school and met Dominic and his teacher near the office. Luckily, he didn’t get stressed out when he saw me and actually gave me a kiss. He just washed the medication down with a cup of water and said, “Bye, Mommy!”

This past Wednesday marked 100 days since Dominic’s fifth seizure. We have an appointment with his pediatric neurologist in about two weeks. I’m so grateful he is on a medication that stops the seizures. I feel for those parents who are still searching for a solution. I can’t tell them I understand because I can’t even imagine the stress they’re under. 

I sometimes wonder if I have post-traumatic stress disorder. That day in June 2015 was like a 100 on a scale of 1 to 10. The only time that comes close to that level of stress was back in January 2011 when I had to rush my daughter, Lauren, to the hospital with severe abdominal pain and my mother-in-law passed away in hospice care on the same day.

I’m already on two anti-anxiety medications. Those medications keep me balanced, and I’m glad that I’m on them. I’ve had more than one person tell me their child “outgrew” their seizures, and I’m hoping that Dominic will one day be in that category.

Until then, I will continue to celebrate every seizure-free day.

Follow this journey on Bountiful Plate.

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Originally published: October 12, 2016
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