When Alena was four years old she started to act "silly" - like any normal four year old... She would stand in the living room or at the dinner table and start spinning around - which really annoyed my husband and I... At dinner one night she stood up and started spinning- to the left. My husband and I both rolled our eyes. We couldn't fathom why she was always spinning around like that. This began happening more and more - and not just at dinner. It would happen when we were playing games, watching TV, reading, etc. It was very strange - and she always spun to the left.
After a while, Alena began complaining of what she called "headaches". I wasn't all that concerned until one day my husband said "You know, she is complaining about this a lot. Maybe we should do something."
That same day, I took out a notebook and started writing down the time and duration of each of her "headaches". Being as OCD as I am, I took this notebook EVERYWHERE. After about two days, I noticed a pattern. She was having a "headache" every 90-120 minutes. These "headaches" would last about 10-30 seconds.
After noticing this pattern, I began to observe her when she said she was having a "headache". What I witnessed was concerning. I remember one particular incident where, when driving, I actually pulled to the side of the road - like a complete maniac, my apologies to the drivers behind me - and watched it play out. Here's what happened;
Alena said "mommy, I am having a headache." I watched her and noticed that her eyes deviated to the left side. She was trying hard to control it but she couldn't. Her head then turned to the left. After about 5 seconds, her eyes deviated to the right and her head followed. Then it was over. She said "ok mommy, my headache is over."
I also remember watching her in our living room when she said she was having "headache". Her eyes deviated left, her head followed, and then she started spinning. She was following her eyes... She kept spinning until she said the "my headache is over".
I was concerned. Very concerned, especially since I saw this happen every hour and a half. I called our pediatrician. They said they could see her the next day. In the meantime, I captured as many "headaches" as I could on my smartphone.
The pediatrician was concerned, but had no idea what was going on. She was very kind and understanding. She even had me send her a video of one of these "headaches" so that she could look into it further.
She referred Alena to a pediatric neurologist in our area. The neurologist scheduled her for an EEG the next week.
When we arrived for the EEG at the hospital, the nurse attached electrodes - so many electrodes - to Alena's head. This was a long and arduous process, Alena was a highly active four year old. After the electrodes were attached, the nurses sent us to a room where Alena was asked to lay nicely in a bed. Ummm...she was four years old. Can you imagine keeping a four year old confined to a bed at 10am?? I brought books and movies to keep her occupied, but it was very hard to keep her still...especially when she had one of her "headaches".
Every time she had a "headache" I called the nurse. They usually arrived within 5 minutes. But her "headaches" only lasted 30 seconds...
We were there in that room, with no one, for about 10 hours. We never saw a doctor. The nurses were great, but I think they thought I was nuts. I would call and they would come but by the time they arrived, the "headache" would be over. I recorded each "headache"on my phone, but they weren't interested in watching them.
The nursing staff got annoyed at me because the electrodes weren't staying attached to Alena's head. She was FOUR - and sequestered to a bed! What did they THINK was going to happen??
After the EEG, we were sent home too wait for a diagnosis from the doctor. We waited. And waited. After a few days I received a call from a nurse.She told me that the doctor had diagnosed Alena with a "movement disorder" and made an appointment for us to see the doctor 6 weeks later.
In the meantime, I had done my research - a TON of research... As far as I was concerned, she was having "simple focal seizures of the occipital lobe" - the symptoms matched.
Around this time I had also begun to notice that Alena's "headaches" started to involve other parts of her body. Her eyelids started twitching, her left arm began twitching. I was beyond worried. I was a wreck. I cried so hard I thought my eyes would fall out.
I called our pediatrician in tears - I didn't know where else to turn. I simply could NOT wait 6 weeks to see a doctor. Our wonderful and compassionate pediatrician told me to take Alena to the Emergency Room at a hospital 30 minutes away. Within 20 minutes of that call, we left to drive to the ER.
When we arrived at the ER, they sent us to a room where a resident listened to our story and watched the videos I had taken. I remember having some sort of weird 6th sense before Alena would have one of her "headaches" - or as the nurses at the ER called them, "episodes". They listened to me when I said "she is going to have a headache" and waited with me until it happened. They watched it. Once. And called the on call pediatric epileptologist - Dr. Popli..
Dr, Popli came down about 30 minutes later to speak with us. I remember how kind he was - he helped entertain my 6 month old little boy, taking him from my arms and carrying him around so he could speak to me about what was going on with Alena.
He told us that he wanted to give Alena another EEG. We agreed. My husband took Alena up to the Epilepsy ward to get the electrodes attached to her head - again. I went home, with my 6 month old boy, to gather clothes and activities for an extended hospital stay.
From what my husband has told me, getting the electrodes attached was easy, SO different from the first time. The nurses were incredible - I will forever be indebted to the caring heart of nurse Michael. But that is is another story.
When I arrived back at the hospital, Alena was all hooked up. She had electrodes all over her head, but to my surprise she didn't have to be sequestered to a bed. She had a little pack that hooked into a plug on the wall so she could move around. She was even able to go to another room - a play room with toys and games and TV.
This EEG was so different than the first one. All of her episodes were captured from a camera mounted in her room and in the playroom. Every time she had an episode I pushed a button. When I did, a nurse came running into the room within 10 seconds to watch it (usually nurse Michael) . They took such good care of us. I am forever in their debt.
The next morning, Dr. Popli came to speak with me. He brought me into a room full of computers. He asked me to sit down. He told me Alena had Epilepsy. I said to him "is she having simple focal seizures of the occipital lobe?" Without a blink, he said "you have done your research". And then said "Yes". He took the time to show me her EEG readouts. He took the time to explain everything. He didn't treat me like an idiot.
And then he started her on medication. But that is another story. You can find in here....