Saturday, April 4, 2009

My Brain Is Dizzy, Part 2.....

Complex Partial Seizures.

That was the diagnosis.

The bad news was Kylee had Complex Partial Seizures caused from Epilepsy. The good news was Kylee had Complex Partial Seizures caused from Epilepsy. Yes, you read it right. That was both the good news and the bad news. They were one in the same.

How is that? It was bad news that anything was wrong with my baby. It was bad news her life would never be the same again.

It was good news that her seizures were not caused from a brain tumor, or a scar or lesion on her brain. It was purely electrical in origin, with no explainable cause.

See, if he had been able to tell us why she was having seizures, it would have been bad, really, really bad.

The Neurologist told us the "dizziness" Kylee was feeling was an aura, you know the feeling some people get before they have a seizure.

He told us the EEG revealed her brain was constantly rapid firing electrical impulses telling her body to have a seizure, thus the feeling that her brain was dizzy.

He thought if we got her started on anti-seizure medication, hopefully we could get the medication to a therapeutic level before she had a full blown seizure.

I remember feeling like I had been kicked in the gut. Even though I knew that was a possibility, to actually hear it, was such a shock. I remember telling myself, "Keep it together, Do not cry". My heart was broken. I was broken. I was so many emotions at once.

I felt guilty as a Nurse for not seeing it sooner. I know she'd never had a "big", obvious seizure but looking back now, I know she was having some seizure activity. I felt guilty as a Mom for all the times she was in front of the television and I thought she was so engrossed in it she wasn't paying attention to me and I fussed at her. She'd tell me, "Mom, I didn't hear you" and I'd say, "How could you not hear me?" After the diagnosis, I knew she wasn't just not paying attention to me. She was having some activity then, as minimal as it may have been. I feel so guilty for that.

The Neurologist was kind and so informative. He didn't just explain it to me, He explained the diagnosis to Kylee. He asked her if she had any questions before he asked me if I had any. I appreciated that.

To be honest, she didn't have any idea what Epilepsy encompassed. I was glad. I remember getting in the car after the appointment and her looking at me and asking, "Ok, now what do I have?"

Everyone was waiting to hear what we found out. Those were the hardest phone calls I have ever made. Not necessarily because of the diagnosis, but because I was having to be strong in front of Kylee and for everybody else.

The 60 mile drive home from Birmingham was so hard. With each mile, it seemed we were further and further away from home. I wanted so bad to cry, I mean CRY. Sob. Scream. Cry. Like somehow, that would make it all better. I felt so alone.

I needed that release. I wanted to cry out to my Heavenly Father, literally. I wanted to cry to Him and tell Him how broken my heart was, and how scared I was and how mad I was that this was happening to my baby. I wanted to cry out for Him to fix it, to make it all better and make it go away.

5 weeks after the diagnosis and starting the anti-seizure medicine, Kylee had her first seizure. December 13, 2006 10:00am. I will never forget that day or that phone call from the School Nurse. The seizure itself didn't last long, only about a minute.

Kylee had reported to her Teacher, she was feeling "dizzy inside her head", so she immediately got the Nurse. Kylee had "the look". It is not a look I can really describe to you. I can tell you it is a look where you KNOW something is going on somewhere really important inside the body. She didn't look "right". She became pale and her skin was cold and clammy. Her eyes were wide open yet she was totally unaware of her surroundings. Once it had ended, she was exhausted and slept.

The body must recover its energy and sleep is how it does it. It works so hard during a seizure that it leaves it literally drained. Exhausted.

I raced from work, heart pounding, to get her. I needed to be there. I couldn't get there fast enough. The 7 minute drive seemed like an eternity.

Just when I had settled down a little from the initial diagnosis, here's seizure #1. Again, came the feelings of fear, and hopelessness and anger. They tumbled in. I prayed Christ would strengthen me. I prayed for my baby girl.

After the seizure, I called the Neurologist, who wanted to maintain the same dose of medicine. He thought maybe it hadn't had quite enough time to become therapeutic and wanted to give it a little more time. I was ok with this.

Kylee slept for about 2 hours following the seizure. Once she woke up, it was like nothing ever happened. She was fine, back to her normal self, with no residual. She had no recollection of the seizure.

Next day, same exact time, seizure #2. School Nurse calls. I remember thinking I can not believe this is happening, not two days in a row. Same exact scenario. She feels dizzy, Teacher gets Nurse, Kylee "looks' funny, seizure lasts 1 minute, she sleeps afterward.

Again, I race from work to get her. She sleeps 2 hours and wakes up back to normal with no memory of seizure.

I called Neurologist again. He has to do something today. He increases her medication without me having to request it. I was ok with this.

January 23, 2007, we had our 3rd big seizure. She was at school. Same time of morning as the other two, so this time the Neurologist increased the night time dose. She takes it every 12 hours.

She was a trooper. She really tried to be. Her body was doing weird things, she was having to take medication twice a day, staying at anybody else's house was out for the time being, riding her bike outside alone wouldn't be happening.

There were so many changes for her. She tried to settle into a normalcy. I tried to settle into a normalcy. I tried to remember not to be too overbearing, yet watchful. I wanted her to still be a kid, yet responsible. I wanted her to be careful and cautious yet live life fully.

We had so many people that were supportive and helpful. Her close friends were awesome. They were like little Mother's watching out for her in school. Their parents were great in talking to them and in explaining to them what was going on. We tried not to make a big deal out of it at least not in front of everybody. More than anything, we wanted her to feel like a normal child, not different.

I loved the people that would ask me what we found out and I would tell them she had a seizure disorder and they would say, "Oh, at least it ain't EPILEPSY", or "That ain't that EPILEPSY is it? As if Epilepsy = Leprosy.

What I wanted to say was, Yes, it is Epilepsy, thank you. Seizure Disorder is just a prettied up word for it because people like YOU think Epilepsy is a death sentence, the same as LEPROSY!!!!

My employer, was wonderful. I have worked there for 20 years. The owner of our company is like my Daddy. I was 17 when I went to work there, so needless to say it is like home.

Anytime Kylee called and needed me, I went. I would have went anyway even if they hadn't been great, but it's nice to know you don't have to worry about your job, or whether you'd still have one when you get back.

Things took a turn in February. It was by far the worst month.



1 comment:

  1. It seems so long ago that this happened.She is such a remarkable young lady now,and has handled these trials in a way that defies her age.Thanks again for sharing.