ANOTHER DIAGNOSIS?!?!

A few days later, I got a call from Emily's pediatrician & she said that Emily's EEG showed abnormal brain activity/seizure activity. She referred us to a pediatric neurologist. He ordered another EEG. After the second EEG, we went to see the neurologist. He was very concerned that Emily could be having Infantile Spasms. These are a specific type of seizure seen in infants & children. With these seizures comes developmental regression & a specific pattern on the EEG. These seizures can be very serious & need immediate treatment that can include hospitalization to administer medication, which can include a daily injection. I was so completely overwhelmed with this information. Before we went to the appointment I was thinking, "Emmie has seizures, just give her some medication". If it were only that easy!!!

The doctor decided to admit Emily into the Epilepsy Monitoring Unit (EMU) for 24 hours at the hospital. During this time Emily would have constant EEG & video monitoring. The goal was to catch as many seizure events as possible. Every time I saw an event I was supposed to press a button & a doctor or nurse would check Emily & also mark the EEG. The doctor would then compare the video with the brain activity on the EEG.

This situation was extremely overwhelming for me. I was worried about Emily. I wanted Eric with me! I needed his help making decisions for our little girl. I needed his support & I wanted us to go through this together. I was worried about Aidan. What was I going to do with him? Who would stay with him? He already worries about Daddy being away & gets nervous when he is away from me for too long. Luckily, Aidan was in school at the time so I didn't have to worry about him during the day. I am so grateful to my mom for coming to help out. Mema to the rescue! She stayed with me & Emmie in the hospital. She also stayed overnight with Emmie. I thought it would be best to stay with Aidan & get him to school the next day. The regular routine is always best for him. He was worried about his sister. I told Aidan that Emmie was getting a check up. I took him to visit her at the hospital so he could see that she was OK.

Once again, Emily had to have 22 electrodes glued to her head. This time the nurse used a paste & an air gun to get them on. It was very traumatic for Emmie, me & my mom. Our sweet, happy girl was screaming at the top of her lungs & crying her little heart out. It was heartbreaking to watch. It wasn't hurting her, but the noise terrified her & she felt some pressure on her head.

After Emmie was hooked up the nurse put a blue backpack on her. This contained all of the wires & helped to keep them out of Emmie's way. Emmie was able to move around, eat, sleep, sit up & we were able to hold her & put her on the floor. She looked like she had a head wound from the war with a big gauze bandage wrapped around her head & all of the wires coming out. My poor girl!! Emmie was still her happy self.

The hospital had a room where we could check out toys for Emmie. A clown stopped by for a visit & made a purple rose for Mommy. Therapy dogs came by to cheer us all up. In a small way, it helped to make the situation a little better.

During Emmie's stay, my mom & I found ourselves pressing the button more times than we wanted. TOO MANY SEIZURES!!! Emmie had about 20 seizures while we were there. We learned that Emmie was having more seizures than we thought. There were times when she would stare into space...seizure! Sometimes she made a snorting noise...seizure!! Sometimes she would make funny faces...seizure!!! not all of the episodes were visible. After consulting with 4 other doctors, the neurologist concluded that Emily was not having Infantile Spasms & diagnosed her with Epilepsy...a kick to my gut!! Another thing on my plate..the worry, the stress, more appointments, another diagnosis...dear God!!! WHY???? Why my little girl? She already has so much working against her. Please don't give her something else!!!!!!!

The doctor prescribed a medication for Emily, Zonisamide, 25 mg, once/day. The medication would hopefully get the seizures under control & ultimately stop them. It sounds so simple, right?!?! Little did I know this would only be the beginning of a very long process.....