On Becoming a Medical Mom:: My Child Has Epilepsy

Around 50 million people in the world live with epilepsy, including many children. This is one Houston mom’s story of her child’s diagnosis and continuing journey to live and cope with, as well as raise awareness about the condition.

 I never thought I would be a parent of a child with a serious medical condition. I mean, I knew it was possible, but I just didn’t think it would happen to me. My husband and I are both healthy individuals. I had a very average, uneventful pregnancy. My child came into the world without a hiccup, beautiful and strong and well… normal. But that’s how life is, right? It throws you a curveball when you least expect it.

On Becoming a Medical Mom:: My Child Has Epilepsy

Arriving at an Epilepsy Diagnosis

We started to notice that something wasn’t right with my youngest, Caroline, at about 9 months. She started to have jerking episodes when she was eating or drinking. They didn’t seem to bother her, so we didn’t panic right away. Sometimes kids can have myoclonic jerking when stimulated. Normal, right?

However, by the time she was a year old, she started to mentally “space out” when these jerking episodes occurred. It was freaky. She would be laughing or babbling, and then BAM! Blank stare accompanied by an upward jerking of her arms. And they started to occur at other times throughout the day when she wasn’t eating or drinking. NOT NORMAL. My mom gut, and my medical gut, instantly told me she was having seizures, but when I tried to Google or YouTube search the description of what was happening, it was hard to find any answers. 

We decided to consult a pediatric neurologist in the area who was a friend of my husband’s from medical school {coincidence much?}. Since this was all occurring during the COVID-19 pandemic, our visits started out virtually. I was lucky to catch one of her episodes on video and send it to him. Word of advice:: your medical providers LOVE videos of abnormal events, especially when they are hard to reproduce at a visit.

Fast forward a few months, a 72 hour at-home EEG {boy, was that fun!}, an MRI of her brain and various lab and genetic tests, and we had a diagnosis:: myoclonic epilepsy of infancy. Come to find out, this is actually a rare disorder; no wonder I couldn’t find any information online!

On Becoming a Medical Mom:: My Child Has Epilepsy

Our Reality Today

Fast forward another 9 months, numerous medication regimens, consulting another specialist, a hospital stay, and multiple other imaging and lab tests, and here my Caroline stands today, still having seizures, developmentally delayed, and no treatment plan thus far that has worked.

But I have hope! We have some things planned with our neurologist and dietician coming up that may make a difference. We are in excellent hands, both our specialists’ and God’s. I know not everyone is religious, but I am, and I truly believe God placed this little girl in our lives because He knew we would take care of her. 

It has truly been a great lesson in patience, perseverance and positivity this past year and a half. We are so thankful for everyone that has been so encouraging and helpful because it has not been an easy journey. It is hard to walk the footsteps of a parent of a child living with a chronic disease, no matter what it is. Do me a favor:: If you meet any of these parents, befriend them and check on them regularly. They may look like they are doing ok on the outside, but inside there is a constant struggle. It helps to have caring people around us, supporting us.

If YOU are one of these parents, know that you are not alone, and you are doing a great job. God chose you for a reason:: to shelter, care for and love this child that you have been gifted. You do not have to make this journey alone. We are here for you. I am here for you.

Celebrating Purple Day

And lastly, let me ask a favor of you, dear Houston moms. On March 26, wear purple. Purple Day is an international movement to raise awareness of epilepsy. Almost half a million children in the U.S. are living with this disorder. Talk to your kids about how to support their classmates and friends with epilepsy. Learn seizure first aid. Participate in the virtual Walk to End Epilepsy in Houston on May 15. Raise funds for the Epilepsy Foundation of Texas. There are so many ways you can help make a difference. 

Thank you, 

Your Fellow #HoustonStrong Mom

On Becoming a Medical Mom:: My Child Has Epilepsy


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2 COMMENTS

  1. Caroline & Emilia are so lucky that God has given them to you. Y’all are very special, loving parents to the girls. You go above & beyond to make their lives happy, fun, loving & comfortable. So very proud of you & Stu! God bless 🙏🏻

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