Water and a Timer

Medication transitions in children with epilepsy are a tricky business.

Some drugs have to be backed off slowly.  The new drug must be added slowly.

During this change parents must watch for seizures from removing the old drug while also monitoring for side-effects from the new drug.

Also if the new drug is the wrong drug, there may be a reaction.

We went through these transitions over and over again with Rose.

Some were uneventful, but a few were very scary.

Once when she was transitioning rapidly due to seizures and side-effects, she went toxic.

My calls to her doctor were frantic. I remember I could barely get out the words.

I told the nurse that Rose was listless and I felt like we were poisoning her.

The wise nurse told me to stop the new drug and get a timer.

She said to keep setting the timer for 20 minutes. Every time it went off, wake her up and make her drink water. We did this for hours until she finally improved.

Maybe it made no real difference, but Mama had an assignment that she thought would help her baby.  Not knowing what to do to help your sick child is torture.

At least I had my job to do while we waited for the wrong drug to leave her system.

SEIZURE MAMA

This is for YOU

My life has been funneled to this task.

It is almost like I am not allowed to start anything else.

I feel like Jonah running from God.

Jonah did not want to go to Nineveh. I do not want to write this book.

I have PTSD, for goodness sake.   Must I relive this trauma?

Yes.  Because you are out there.  Feeling like the sky is falling.

Afraid.   Alone.

And I understand your pain.  I know your fear. I know your loneliness.

If I turn my back on my past and try to forget this experience,

I am turning my back on you.

I cannot do that. Whoever you are.

I am here.

God bless us both.

Seizure Mama

 

Never a Good Time for a Seizure

No time is a good time for a seizure, but there are times that are unbelievably bad.

When those horrifically timed ones do occur there is a wave of disbelief.

Really? Now? Could we not make it through this one event without a seizure?

Let me share.

Rose had a seizure in line at a funeral home. We had to quietly sit her in a chair and hold her up until it was over, then find a wheelchair and whisk her away.

Then there was the time she was playing with the band at a football game. Her seizure cleared the stands and stopped the music.

How about a seizure under the goal during a high school basketball game?

Seizure followed by bike wreck in campground in South Dakota aka Middle of Nowhere.

Seizure on the sand at the beach.

In a pool.

While planting a plant, then a face plant; eyes open, resulting in a scratched cornea.

Flipping off of a bench into gravel.

During a Brownie awards ceremony.

Under a picnic table on concrete.

Enough!  Everywhere.

You start to feel punished for doing anything.  You start to feel damned.

But you go on.  This is the bad hand you have been dealt.

Play the hell out of it.

Seizure Mama

 

 

Should We Go?

Seizures steal so much, that we hate to give them anything out of fear.

We do not stay in the house waiting for the next seizure.

We do not want the fear to win like a terrorist.

But we have to ask ourselves, “Should we go?”, before certain outings.

Swimming?    Stay within inches of her.  She must wear her snug life-jacket.

Parties?     Let her sit in a sturdy chair with armrests.  Stay cool and hydrated.

Outside?    Stay in the grass.  Take breaks when red in the face.

Restaurant?   Booth please.  No Red 40 in food.  No alcohol…

Camping?  Route to nearest hospital mapped out. Pack emergency medications and first aid kit.

We go where we want,  but there are plans and modifications to be made.

We always have the “Seizure Bag” with supplies, towels, small blankets, extra clothes, wipes and bandages.

DO NOT JUST STAY HOME.

Do not let a three minute seizure have the other twenty three hours and fifty seven minutes of the day, out of fear.

None of you will get any day back.  Push the limits.   Others will try to limit you.

Rose had seizures in pools, at parties, in a tent camping, riding a bike, on the beach, eating in restaurants, shopping in stores, at Brownies, at Bible School,  even in a funeral home line and in the parking lot after her college graduation.

Handle it calmly and quietly for those three minutes. Then pause to recover and continue. EMS if needed.  They do not have to transport.

Afterward we all have a rest in a quiet place or in the car.  Then return to the activity if possible.

Do not stop your life and wait.  This is the only life you have.

Do not let the seizures seize it.  Live it bravely.  Live it big.  Get out there.

Should we go…?

YES!

Seizure Mama

 

 

 

 

Standby or Stand Down?

It is a very hard call for a mama of a child with a condition like epilepsy

to know when to stay close on standby

or back off and stand down.

The mother instinct is strong,

but I did not want a weak child.

It’s been hard to watch the knocks.

It’s been hard to let her fall.

We stand down almost all the time now.  How, you ask?

We let her fall years ago. She got back up.

Her seizures were never hidden. So there was no secret to protect.

She is so resilient.  That is what makes her able to be independent.

Seizures seized enough minutes of her childhood.

They should not be entitled to the rest of her time.

Seizure Mama

 

Stair Pairs

We would not allow Rose to go up and down the stairs in our home alone.

Her seizures were sudden and strong.

Her arms would go out straight and stiff as she dived face first into the floor.

To be sure she was not alone on the steps, we devised “stair pairs”.

As she went down, someone was directly in front of her.

She would put her left hand on her partner’s waist. Both persons held the handrail with their right hand.

It was like a down-the-stairs dance.

The same was true of going up the steps, except in reverse.

The partner would be in the back with his/her hand on Rose’s waist.

Everybody knew the drill.  All she had to do was call for an escort.

Safety on the stairs.

Seizure Mama

Echo Whistling

When Rose was deep in the throes of epilepsy, she had to be monitored constantly.

At first, this required calling her name for a “What?” or stopping whatever I was doing to go look at her.

Then we developed the game, Echo Whistling.

Every few minutes, I would whistle two random notes,

then she would echo the same notes back.

I only called her name when I wanted her attention.

The check in took a fraction of a second and we both went on with what we were doing.

When there was no response from her, there would be seconds of panic until I could get to her and look at her. She was usually busily playing.

We “echo whistled” for years, it was a habit for us both.

Sometimes I would hear her whistle in her sleep.

I wonder if I did too?

Seizure Mama