My Daughter Has Epilepsy

Three weeks ago, between posing, smiling and shooting, I received a phone call. Dottie, my 7 month old daughter, had a seizure while at childcare.

This past week, while I was chatting on the phone, my husband's voice called from the other room. Another seizure. We rushed to the ER. That same day a few hours later after her EEG, she had another seizure. She was started on anti seizure medication immediately at Children's Mercy. A day later, after a read out of test results and an MRI, Dottie received a diagnosis. 

I've been battling and internalizing a lot of my feelings about this. I was worried if I shared how scared I am, I wouldn't be strong enough for her. 

I guess it doesn't really matter and I need to get this out somewhere.

When I got that phone call and I was at work, I was scared out of my mind. Seizure? Why would she be having a seizure? Thoughts raced through my head while I sped to Michelle, our childcare provider and one of my best friend's, home. Is she having an allergic reaction to something? Is she aspirating? 

I pulled up to the house and saw Michelle, one of the strongest people I know, disheveled and holding my baby. Dottie was out of it. Her eyes were foggy and the color was gone from her face. I ran from my car and up to my friend to hold my child. It was like laser-vision had taken hold and as soon as Dottie was in my arms, I realised that we were surrounded. Michelle's family, extended family, our friends up the street, and the paramedics came into focus. I looked down at Dottie and around at all the faces. I knew that Dottie was in great hands here; loving hands.

We were shuffled into the ambulance. I was asked questions. I talked to Dottie. She didn't want to look at me. My bubbly, sweet baby wanted nothing more than to sleep. 

We left that ER without answers. Dottie didn't have a fever and all of her blood work came back normal. The doctor on call said that it was unlikely for a baby to have a seizure in the first place and even more unlikely to have another. We should just not worry about it. 

The following week was stressful. I tried to keep it together, but the guilt and fear of not being with her kept me up at night. What if she has another seizure? Will I know what it looks like? I researched everything I could at all hours of the night. I watched baby seizures online. Trained myself to be ready, strong, immune to the helpless feeling of watching a tiny baby seize. 

We met with the neurologist, came up with an emergency action plan that I hopefully would never have to use. If she seizes again, film it.  

The days passed slowly. Dottie was smiling again. The weather changed here and suddenly we were swinging on swings, laughing, and giggling. The next night I slept for the first time in nearly two weeks. Then Thursday came.

It happened while I was on the phone with my doctor's getting test results of my own. My husband's voice called from the other room. "Dottie is having a seizure!" I ran in. There she was. My baby girl looked just like the babies I watched online. I knew what to do. 

Step 1. Look at the clock. 9:13am.

Step 2. Deep Breath. Inhale. Exhale. There is nothing I can do to stop the seizure.

Step 3. If there is someone with you, have them film. I looked at Alan. Grab your phone. Press record.

Step 4. Wait. If it's over 5 minutes, get ready for the emergency medication. 

I watched my Dottie; eyes back in her head, body clenching, releasing, lips moving rapidly. She held her breath. Released it. I touched her head. Told her it would be okay. Her tiny body unresponsive to my voice. 

This was the longest two minutes of my life.

We went to the hospital. Since we had filmed the latter half of the seizure, we were able to show it to the doctors. We were admitted. Dottie had an EEG. They told me that if they would see anything on the EEG to indicate another seizure, that they would tell us. They hadn't found anything on the EEG to indicate another seizure. Good news. 

Yes! This might be it! I thought. We might be okay and this could all be a fluke! 

A couple hours had past. Morale was high in our hospital room. A shift change in nurses was happening soon. We were introduced to the next nurse that would be with us through the night. Dottie was feeling like her old self and was standing up in her hospital crib, dancing. The nurses couldn't get enough of her booty shaking. That's when the staring started.

Dottie stopped dancing, eyes focusing on something that I couldn't see. Her tiny body started shaking. The nurses laid her on her back. 

Seizure number 3.

This seizure, this one that they didn't see on the EEG, was the worst one for me to watch. My hope for this to be random and a fluke disappeared with her convulsing on the hospital bed. I knew at this point there was something wrong with my daughter. They put her on Keppra-an anti-seizure medication that she will be on for a minimum of 2 years seizure free.

Dottie had an MRI scheduled for the following morning. The results of the MRI were initially abnormal. The radiologist overcalled a lot of the findings because Dottie was so little. From random white parts of her brain, to something that looked like a scar-he noted all of it. The official read from the neurologist was that Dottie's brain was unremarkable with slight asymmetry that couldn't be clinically connected as the cause for her seizures. There was hope! The neurologist said she believes Dottie could grow out of this. 

We left the hospital again without many answers. There was no defined reason as to why the seizures happened. The diagnosis of epilepsy weighs heavy on my heart. We know that she hasn't had another seizure since we started her on the anti-seizure medication. If Dottie goes 2 years on this medicine without a seizure, we can clear this diagnosis. I hang on to this hope with white knuckles and am counting down the days until 2 years from last Friday. 

7 days down. 

723 days left to go.

Pray for us.

Love,

Hilary Hope 

For More Information on Epilepsy, visit: http://www.webmd.com/epilepsy/