March 26, 2012

On a Personal Note...

It's Purple Day.  I know that means nothing to most people, but it means something to me.  Purple Day is a day set aside for epilepsy awareness.

Epilepsy is a condition of recurrent (two or more), unprovoked seizures.  Seizures occur when the electrical pathways in the brain do not work properly.  Some people can even talk through a seizure.  Others may appear to be "absent," with their eyes open, but unable to respond or remember what was said.  Of course, many people recognize convulsions as seizures, too, but it is important to keep in mind that seizures can appear differently.  (A provoked seizure would be one due to blood sugar, fever-called febrile which are harmless, meningitis, or some other reason.  Big Sis had two febrile seizures as a baby/toddler, however because they were due to her spike in body temperature, she does not have epilepsy.)

Anyone who has witnessed a seizure knows that it is scary...terrifying, really.  (I have witnessed a diabetic seizure, two febrile seizures, and Brother's.  They were all scary.)  My friend described to me how when her baby had a seizure, her husband dropped to his knees and begged for his daughter's life.  I suspect many in his shoes do the same thing.

Brother does not have epilepsy, however, he has been under a doctor's care for the past two and a half years due to a seizure he had days before his first birthday.  UPDATE: Brother DOES have epilepsy now.  He has had a second, unprovoked seizure.    It was a Thursday morning.  I could hear Brother making whimpering sounds through the baby monitor.  These sounds were not unusual, so I ignored it.  I prepared breakfast for Big Sis, put her on the bus, and took a shower.  After all of that, I went into Brother's room.  He was convulsing in his crib.

I thought I knew exactly what was happening based on Big Sis's two febrile seizures.  I called 911.  (It was the first time they did not keep me on the line.)  Then I called my husband at work.  We knew we'd be at the ER for a long time, so we made plans for him to come home and care for Big Sis.  We were calm.

By the time the ambulance arrived, Brother's convulsions had changed.  I thought they had stopped, but they were just different.  (Basically, it began as one type of seizure and then changed to a different type.)  When we arrived at the children's hospital an hour later, it began to get scary.  It was then that the staff made me understand what was happening and jeopardy my son was in.  Despite all they had done, they could not get Brother out of the seizure.

It became obvious that Derek needed to be at the hospital.  (My blubbering didn't help...despite Big Sis being in a life-threatening situation before I was having a tough time with this...)  My husband was about one and a half hours away. My pastor arrived long before Derek, dropping everything to be with Brother and me.

After about three hours of seizing (and at least an hour or more at the hospital), they did get the seizure to stop, and Brother was admitted to the Pediatric ICU.  He was in the hospital through Monday, including his very first birthday.
That began our journey.  As far as we know, he has not had any seizure activity since then.  He takes medication twice a day and has had several EEGs.  Typically, one seizure would not be enough to warrant medication.  Brother is under a doctor's care due to the severity and intensity of Brother's seizure.  We are currently weaning Brother (under his neurologist's supervision of course) from his anti-seizure medication.

It was amazing how God prepared a friend of mine, in advance, to be a wonderful support.  Her son also deals with seizures.  Our boys even had the same (fabulous) neurologist and are being weaned at the same time.  (I just don't have to think about my son driving yet!)  God also prepared me to be that special friend.  Since October 2009, I have the chance to support and pray for two other families dealing with seizures.  I am so glad that out of our difficult days, God not only brings us, but he also has used me to be a better friend to someone who needed understanding.

We pray that this is all part of the past, but only God knows.

PLEASE READ OUR UPDATE HERE....

Some last thoughts for you:
Seizures have many different "looks."  Some people have "convulsions."  Others have a blank stare.  Sometimes a person has a repetitive movement that they have no control over.  Sometimes their eyes go off to the side.  Sometimes it is a combination of things.

If you witness a seizure call 911. (You can always call the ambulance off if the seizure stops and drive the person to the emergency room.)  Also be sure to watch what the person's hands and eyes do during the seizure.  That information will help properly diagnosis and treat the seizure.  The following chart is also helpful.  If the person has a history of long seizures, they may have a medication (suppository form...) to use.  They likely don't leave home without it!
Source
 You never know what might happen.  Make sure you know what to do.

6 comments:

  1. When it's not in your personal life from day to day you don't tend to think about it. So, I hadn't specifically remembered his seizure being that severe until you wrote about it.

    Interestingly enough, a local school district down here used purple day for anti-bullying, so I was trying to think of why you had a personal connection to anti-bullying at first.

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  2. I read through this list but I hope I NEVER have need of the information!

    E's experience with his first seizure sounds absolutely frightening. Petrifying. Thank You, Lord, for watching out for E and thank you for keeping him seizure free!

    Yowee.

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  3. Thank you for the information - I wouldn't have known what to do at all.

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  4. So glad that you posted this! Even though our experience was so minor compared to what others go through, I take the opportunity to "educate" a little when I get the chance. This post was so perfect for raising awareness.

    Kate

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  5. This was scary just reading! I hope all of that is completely behind y'all! Thank you for those lists, too. Since Jonathan is a paramedic, sometimes I take for granted that he will know what to do if anything goes wrong. He's not always here, though. I need to be better prepared!

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  6. Hello, thank you for linking this post to my blog! It's very reassuring and comforting to know that we're not alone and that we can make it through this! Blessings!

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