Saturday, March 08, 2008

A Memorial Day to Forget

Our little girl Ava’s big story began in late May of 2006, Memorial Day to be exact. As she laid on the floor napping like any eight-month old does I heard a peculiar sound from her and quickly noticed some very violent muscle and eye movements.

Immediately my heart sunk as I began trying to snap Ava out of it and trying to wake my husband on the couch next to her…. Joe, Joe, JOE, GOD DAMN IT JOE WAKE UP. It felt like an eternity, both the length of the seizure and the time it took to wake my husband up…and simultaneously the seizure stopped as he woke up.

“You must be over reacting” I’m pretty sure this is what he woke up saying in his dazed state. Hmmm…I don’t think so but what the hell did just happen?

Ava now lay sleeping so I must have been crazy, maybe I need some sleep, and hopefully this NEVER happens again. Tuesday rolls around, Joe’s back at work and what do you know, seizure number two.

I now call the doctor’s office, panicked, only to hear from the nurse…”you can bring her in at 10:00 but there’s not much we can do”. WTF??? Not much you can do, what exactly is it you suggest I do then??? “Well, come in at 10:00 and we can take a look.”

I’m not sure if anyone reading this has ever witnessed a seizure so I’m not going to fib…it is one of the most bizarre things I’ve witnessed and the scariest experience I’ve ever had. As a complete feeling of helplessness came over me I first called my husband (who just started a new job) and then my mother (who could take time off work at her job) to recruit a sane hand.

“Please come help me, I need someone to go to the Dr office, I’m a complete wreck.” Ask and you shall receive, Grandma Cindy to my rescue! Ava’s doctor was on vacation so we took a spot with another doc…his opinion…your crazy ma’am. Maybe your daughter is experiencing “Night Terrors”; it is really uncommon for a healthy infant to have seizures.

No shit!

He didn’t even suggest videotaping or a call to the neurology department at Children’s. Advocating 101, my first lesson! That doctor, I am pleased to say, is no longer practicing at the clinic I take Ava to for primary care. Needless to say the seizures didn’t stop and continued to come around the time Ava was sleeping so I continued to investigate and try to make sense of this damn night terror thing.

Finally, a seizure during eating time…not nap time, this is new. Should I call the Doctor and be ridiculed again about my seizure diagnosis skills??? Of course I did and I didn’t even have to go see him. He immediately agreed she was not experiencing “night terrors” and asked me to get a video tape of her seizing. He set up an appointment at Children’s with Neurology too…it will be four months before they can see you though.

Excuse me; September is the earliest we can be seen? Indeed, it was and another day passed and what do you know? I had my video on and caught a seizure, a 7 minute one at that. Our appointment at Children’s was moved from 4 month wait to a 3 week wait. In the meantime, she was started on Phenobarbital and her doctor worked close with us and Children’s monitoring the initial drugs. There may be a God but I’m still a skeptic!

Since then Ava has had numerous EEG’s, a CT scan which ruled out brain cancer, MRI that showed normal brain development and genetic and metabolic testing, 3 rounds to be exact, leaving us still with no answers about what is going on. Her seizures have been under control since late August of 2006 and we are currently at 50% of her original med load of Topamax and totally weaned from the Phenobarbital.

The down side of the seizures has been the effect it had on her vision. She has a condition known as CVI (Cortical or Cerebral Vision Impairment) and wears a patch during a couple hours daily for Strabismus which has caused Amblyopia (this is also neurological; it can be muscle or neuro related). Vision is responsible for 80% of development in small children, it ties all senses together. Add a cocktail of neuro meds and making sense of your world might be nearly impossible, at least initially.

She is considered epileptic because by definition epilepsy is a “seizure disorder” but she has no specific type of epilepsy. The type of seizure she experienced is called a partial complex seizure. Most of her seizure and misfire activity is in the occipital region of her brain and this is the area responsible for processing vision, among other things. The hope is she will outgrow the abnormal brain activity and eventually be weaned from all meds along with regaining some normal vision.

I’m happy to report she is doing fantastic! Her development is delayed but it is not broken. She may too drive one day. Memorial Day 2006 may not be a day to forget but it is a day I hope becomes less significant to Ava's life.

This is a hard thing to explain so hopefully the links to the right of the blog and this story can help you better understand Ava. Thanks for reading my lengthy re-count of the little red heads journey and check back for updates on her progress!


Anonymous said...

You have strength that runs deep, the kind I would hate to have to find out I had. You help keep my perspective in check. I'm proud of you, Taz. Keep your head up! 'Member KSDZ played all oldies on Sundays...oh, I HATED it! I'd be singin' the words to songs and be pissed just 'cuz I KNEW the words and didn't even wanna be listening to it! But, I fell in love with that one song..and I can't remember the name of it but I hear it every now and then... and when I need to it seems... "Oooh, Child, things are gonna get easier. Ooh, Child, things'll be brighter." (I really AM singin' to ya here....)
Love ya, girl!

Angy & John said...

You are truly an amazing woman. I am glad that I too can read your blog. I learned a lot about Ava today. She a tough little girl. I can't wait to see her walking around myself next time we hang out.