Monday, November 19, 2012

For some of us, it is part of life.

Welcome, to Dana Lambert, a fellow blogger and mother of four.  
 Today she shares her thoughts with us on living with epilepsy.

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Dana Lambert
November is Epilepsy Awareness Month. I have to admit when I was approached by Emily Cook from Weak and Loved to write this guest post I was a little unsure.  I've never written a guest post, much less shared about our life with Epilepsy outside of my own blog.  But in the hopes of making others aware, I knew I would certainly give it a try.

Epilepsy has been a major part of my life for as long as I can remember.  My Great-Grandfather, Grandfather, Mother and I all have had it and now both of my daughters, Emmalee and Laycie, share this disorder.    For us, it is familial, meaning it has traveled directly through generation after generation, never skipping.  More than likely at least one of each of my daughter's children will have Epilepsy, too.

I know both sides of life with Epilepsy – the side of the patient and the side of the caretaker.  I, personally, cannot remember much about my seizures but I do remember many trips to the Medical University of SC (MUSC) for check-ups, EEG's, blood tests and more.  I never expected to be going through the same things with my own daughters.

Emmalee 3 months old
Baby’s first seizure
Emmalee, my oldest daughter, was 3 months old when she had her first seizure.  I was assured by our local medical staff that it was simply a Febrile seizure, though she hadn't been sick beforehand, nor was she running a fever.  She simply had a seizure for no apparent reason.  A few days later she had another one.  It was then that the doctors decided perhaps she should have an EEG and see a specialist.

There was no Pediatric Epilepsy Specialist in our area at that time.  The local neurologist didn't work with infants as young as she was.  The hospital was ill-equipped to give an EEG to an infant.  Finally, I insisted our doctor refer her to MUSC where I had been treated myself for my Epilepsy.  Her first appointment was set for a month later but was quickly rescheduled as soon as her medical information was faxed over and reviewed.

Emmalee was 3 ½ months old when we first saw a neurologist.  She was on medication for her seizures for 4 years.  This year, at age 9, Emmalee was tested with her last EEG showing results of having officially outgrown her Epilepsy, no longer requiring treatment.

Emmalee today
Laycee, 4 months, at the hospital
Not her, too!
I never thought I'd be going through the battle with Epilepsy twice as a parent.  Laycie is my baby girl and she began having seizures at 4 months.  Her seizures also began out of the blue, for no apparent reason.  Thankfully, with her, we were better prepared and more experienced.  I knew we weren't dealing with Febrile seizures – this was definitely Epilepsy. 

Laycie was originally tested at Greenville Children's Hospital, near where we were living at the time.  It was immediately assumed by medical staff there that she had been abused and she was tested in every possible way to be sure I hadn't done something to cause her seizures.  I wasn't allowed to hold her, barely allowed to touch her and I was watched like I was a criminal while I stood at her side in tears. 

Laycie had an EEG, EKG, MRI, Cat Scan, X-rays and more done – if there was a test, she went through it.  As results came back showing no signs of trauma or abuse, staff attitudes changed from condemning to concerned.  Eventually the staff had to admit that I was right and she had Epilepsy.  She was placed onto medication and 3 days after coming to the hospital she was sent home. 

I was happy to have my sweet baby back to normal.  Her medicine was controlling the seizures.  Two weeks passed and suddenly her medicine abruptly stopped working.  There was no warning signs that it was coming.  She just began seizing and this time she didn't stop. 

Setback
Between the hours of 6:45am and 7:30pm, at 4 ½ months old, my sweet Laycie had 9 Grand Mal seizures and multiple Petit Mal seizures.  I was terrified and I thought surely my baby would die.  I cannot recall a time when I prayed so hard in my life as I did that day.  Nothing the doctors did would stop the seizures.  When she seized, she would stop breathing.  I just knew the end was near.

Finally, that night the medication kicked in and the seizures became controlled.  Laycie was so lethargic that she slept for days afterward.  She was not herself for quite some time.

Laycie is 4 now.  She is amazingly smart.  Her seizures are controlled.  Her EEG shows spikes mostly at night.  This year she was diagnosed with an official type of Epilepsy – Rolandic Epilepsy with BECTS.  She is the first of our family to have an actual specific diagnoses.
Laycie now, with little brother Jackson
For us, Epilepsy is a part of life.  It is a part of who we are.  We have never experienced life without Epilepsy.  I tend to say we are blessed, simply because I know we could have a much worse disorder to deal with.  I can deal with this disorder easily most days because it's something I know well.  It's a part of me and of my girls.

I advocate for Epilepsy.  I spread the word for Epilepsy Awareness, to make life easier for my daughters and others like them.  I share what I know with other Mothers and have been blessed in my friendships because of my connection with Epilepsy. 

You can do the same.  You can start by learning more about Epilepsy.  You can share links about this disorder to help break the stigma that surrounds it.  You can simply talk about Epilepsy to others you know.  Spreading the word is simple, you just have to take the steps to do so.

To learn more about Epilepsy visit the Epilepsy Foundation online at www.epilepsyfoundation.org.  Remember that Spreading Epilepsy Awareness starts with you!

The four Lambert children
Visit Dana's Blog: www.luvnlambertlife.com 


Please say a prayer today for the Lambert family, and for all who fight with epilepsy.

Please also pray for Halie Brumley, a little girl from our church who is having epilepsy-related surgery today.

To Learn More about Epilepsy
What is Epilepsy 
Epilepsy Center at Cleveland Clinic

Have you read Aggie's story?
Weak and Loved: A Mother- Daughter Love story
Available on Amazon.com

2 comments:

  1. Wonderful post!

    Sometimes we don't see the "awareness" month beyond the name. It's easy to get complacent about what the "soldiers on the ground" feel and do throughout each day. For our family it's autism.

    Thank you for your insight. :)

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  2. Lord God, we come to Your throne of grace today for Halie Brumley and her family. Grant skill and wisdom to the surgical team, give them steady hands and clear minds to perform this surgery. Grant peace to Halie’s parents and family in the waiting process. May Your surround them with love, compassion, and strength. May Your name be honored in all this; through Jesus Christ, Your Son, our Lord, who lives and reigns with You and the Holy Spirit, one God now and forever. Amen

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