Oak Tree Musings

Epilepsy

I was awakened at 5:30 this morning with Abby having a seizure.  I didn't panic. I looked over at the clock to time it. I patted on her and talked softly to her telling her she was fine, and that mommy was here with her.   After 30 seconds, the horrid seizure left her body and she fell into the post ictal period.  I thanked God for only letting it be a small seizure.

She had a seizure yesterday morning as well, only that one lasted 2 minutes. 

If anyone had mentioned seizures to me 8 years ago, I would have not given much thought to it.  I assumed seizures were not very common and it was no big deal, someone would shake and fall down, no big deal right?? Wrong!

Seizures came into my life at the most unexpected time...July 4th, 2003 we were shopping at a flea market in Louisville.  Luke had just turned two.  Joseph was pushing him in the stroller, I turned around to see if he was asleep and found him with his eyes rolled back in his head and he was turning blue.  I screamed for someone to call 911 and grabbed him out of the stroller. I was not sure what had happened to my baby, I begged for someone to help us.  A man came forward from the crowd that had formed around us and took him from me.  He gently laid Luke on the cold dirty cement floor.  Luke began breathing again, but remained limp and unresponsive.  He was admitted for observation at the children's hospital...at 4:00 am, he had a grand mal seizure while laying in my arms.  I can honestly tell you, if you have never seen a grand mal seizure, you do not want to see your child having one.  It is one of the most traumatic things to go through. This seizure lasted over 5 minutes.  As I would later learn, the average grand mal seizure is usually under 2 minutes, anything over 5 minutes is prolonged and has increased risk of brain damage due to lack of oxygen.

We took Luke home, I was scared too death.  But slowly things began to return to normal, at least for 5 months.  On December 12th, Luke had another grand mal seizure.  Ended up he had an ear infection which triggered the seizure.  The neuro said he was fine, nothing to worry about...

January 1st, 2004, I found Luke in the hallway having a seizure.  It lasted over 25 minutes from the time I found him.  The neuro immediately started him on medication.  Luke became critically ill.  He started having 100's of seizures each day...his seizure types were grand mal, myoclonic, astatic myoclonic, atonic, and absence.  When this began happening I knew in my heart that we were in for a long haul.  I told God that I could endure anything as long he granted me peace in my heart.  Praise God, He filled me with peace and renewed my strength. 

Luke regessed severly.  He was not even able to walk or talk on most days.  I would hold him or prop him with pillows to support him.  He would stare blankly ahead drooling and twitching. When he could walk, the violent seizures injured him.  He wore a helmet to protect his head.  He sustained blacked eyes on several occasions, sutures between his eyes, gum/teeth injuries, he was always bruised and battered. 

We sought multiple opinions and all were in agreement, Luke was diagnosed with Doose Syndrome.  We tried nearly every medication, nothing helped...he was on the ketogenic diet for 18 months, herbal tx's, chiropractor, and finally in January 2006, the doctor said we had 2 options, a drug with potentially deadly side effects, or one that was not FDA approved, we would have to get it from other countries.  After MUCH prayer, we felt lead to choose the medication with the deadly side effects. 

Luke was slowly weaned onto the medicaiton and PRAISE GOD, Luke's last seizure was April 14th 2006!  Today he remains seizure free!  He is still taking the medication and gets frequent blood draws to watch for aplastic anemia.  He was severly developmentally delayed.  He went into kindergarten with the abilities of a 36 month old.  Luke is now only receiving a small amount of tutoring and is age appropriate in all his studies!   I am so proud of him!  He played baseball this past spring.  I cried as I sat there and watched him.  Just being able to be a boy and play ball is a feat that I was uncertain would ever happen!  Luke even won a trophy for the most improved!

So you are probably thinking, what about Abby?  Abby was five when Luke became ill.  She was just getting over mono and had her tonsils taken out when Luke became seriously ill.  She was so young, she had to grow up fast.  It breaks my heart to think about it.  She witnessed what Luke was enduring and she always pitched in to help!  She would help me time the seizures and just like a mother hen, she would sweetly talk to him while he was down on the floor.

Luke had alot of seizures at night too so I slept with him to keep an eye on him.  Abby soon became jealous and didn't want to sleep by herself, so she began sleeping with Joseph.  It was July 2004 and Joe screamed for me to come quick.  I ran in to find Abby having a seizure.  I fell to the ground and wept.  Joe went to keep an eye on Luke and I stayed with Abby.  A few minutes later she had another seizure.  I cannot describe how I felt at that moment.  I took her to the neurologist the next morning and they confirmed by EEG what I had witnessed the night before. 

Abby's condition is very different from Luke's. She has benign rolandic epilepsy, the most common form of epilepsy.  All of her seizures have been in her sleep and they are usually complex partials.  She averages 2-3 seizures per month.    Illness and fatigue are her main triggers.  She is having Asmtha flare ups causing her to lose sleep, which is why she has had the seizures the past 2 days.  I'm praying tomorrow morning is uneventful.

Thank you for reading this incredibly long post.  It was hard to condense the story...I want to give God all the glory.  The peace He gave me through this entire ordeal was simply amazing. I believe with all my heart that God wanted us to do all we did medically so we could witness His glorious healing power and know without any doubt that God and only God alone can heal and that He is in charge of every situation. 

I am waiting patiently for God to touch Abby and make her whole.  In His perfect time, I know it will happen.

Blessings to you~ Laura

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08:05, Thursday, September 25, 2008 .. Posted by justmestracy

Laura, May God bless you and your family. I too have Epilepsy, and have had my whole life, I guess. I started fainting at 3 and at 17 was told I had grand mal seizures. However God is Great! and I now only have one every few years, it has been as many as 10 years between seizures sometimes. Sometimes we are lucky and can grow out of these horrid moments. I have found that lack of sleep and not eating well will set me off balance and Stress is a big factor too! I am now medicine free, and doing well, but I at all times have to be prepared to wake up dazed and confussed. I will pray for your family, and it sounds like you are doing a great job. I am hear for you if you need an ear. It must be terrible to have your children go through this, as for me it is only myself and not my children....God Bless and have a nice day!

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09:18, Thursday, September 25, 2008 .. Posted by stitchnchick

Oh Laura...I'm so sorry for what you and your little ones have been through. Seizures ARE traumatic. What a blessing though, that things are better. Thank you for sharing your story.

Amy

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12:56, Thursday, September 25, 2008 .. Posted by gabbie427

I had no idea your children and your family were dealing with this. I don't know that much about epilepsy, but I wanted you to know I was praying for the children, and praying for you dear. You sound like you handle it very calmly and collectively. God must give you the peace to deal with it.

God's Blessings,
Amy Jo

Thank you!

02:21, Thursday, September 25, 2008 .. Posted by blondefarmgirl

Thank you to each of you for your kind words and prayers.