Redefining Typical

A Mother, A Son, A Journey…..with Autism

Autism, Seizures, EEG, MRI, EKG… Our decision not to put our son on medication February 25, 2013

Filed under: autism seizures — Cheairs @ 10:10 pm
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Seizures.

Thinking about them.

Wondering.

When the next one will touch my sweet boy.

There is no “if” it will happen again.

It will.

The doctor has told us this.

The next seizure might happen today or five years from now.

But it will happen.

~~~~~~~~~~~~~~~

My brother had epilepsy.

Children with autism have a greater chance of having a seizure.

Every seizure you have increases the likelihood that it will occur again.

I know the statistics.

I tucked this knowledge in a little box and hid it far away.

Hoping if I stuck  it far enough back in the closet, it would never be discovered.

But like anything that you hide from yourself.

You eventually find it.

~~~~~~~~~~~~~~~

Dawson’s seizures have gripped him approximately every nine months.

They last 10 to 15 seconds.

The doctors tell us that the duration is short.

But I see his blue eyes roll back in his head.

I see him shake.

I see him gasp for air when he comes out of its claws.

And the ten seconds move like the slow chimes on an old grandfather clock.

Slowly.

Methodically.

And with every gong.

I hold my child.

With every swing of the pendulum.

He is not with me.

And the duration.

It is long.

For him.

For me.

Any part of it.

Just too, too long.

~~~~~~~~~~~~~~~

Dawson’s last seizure happened in November.

Just a week before Thanksgiving.

And with the last seizure came the question again.

Do we put our son on seizure medication?

EEG, MRI, and EKG.

The tests have come  back clear.

No residual impact from the seizures.

The EKG ruled out a heart arrhythmia.

Conversations with the neurologists about medication.

Talks with his pediatrician about meds.

Late night discussions with Dave as we flip through the channels on the television.

Trying to decide.

Not in agreement.

~~~~~~~~~~~~~~~

The worry at this point  is the trauma to the head from a fall when Dawson has an episode- not the seizure itself.

There has been no loss in language.

No loss in skills.

The loss has been for us.

The ache that there is one more thing for my sweet child.

That these seizures are his and that we cannot give them back.

No exchange allowed.

~~~~~~~~~~~~~~~

Seizure medications, they are tricky.

Oh, my Lord, they are so tricky.

The side effects.

They are not good.

Not good at all.

And my little Dawson.

He is that 1% that is going to have the terrible side effects from a drug.

And the times between his episodes are so great that we would not know if the meds we put him on are working or if he had a break-through seizure.

We would have no way of knowing whether to up the medication we put him on or to switch to a different one.

But as the clock begins to chime.

We must decide.

~~~~~~~~~~~~~~~

And for now.

No medication.

A helmet instead.

To wear when he is climbing or swinging.

To protect his head from a fall when a seizure happens again.

And supervision.

Someone by his side when he bathes or swims.

And if the seizures become more frequent.

If they become longer.

We will talk to the doctors

And Dave and I will sit in bed late at night.

Flipping through the TV channels.

Talking.

Not always agreeing.

Getting mad.

Touching hands before falling asleep.

Dave will whisper.

“We will figure it out. I promise we will figure it out.”

And I will wipe away the tears.

Because we will.

We always do.

But for now.

For this moment.

The decision is no medication.

 

Copyright Cheairs Graves February 24, 2013

 

6 Responses to “Autism, Seizures, EEG, MRI, EKG… Our decision not to put our son on medication”

  1. <3 I'm so sorry that you all are having to go through this! I cannot image how difficult a decision this must be, either way! You are always in my thoughts and prayers! (((((hugs))))) <3

  2. Diane Says:

    Cheairs, have you thought about training the dog to sense seizures. He can have a therapy dog wherever he goes that detects seizures before they happen. I don’t know, I’ve heard of such dogs, don’t know the details?

  3. Ann Davies Says:

    You and Dave are wonderful parents! You handle everything with such caution and grace! Know that I am thinking about you and praying for you! Miss you!

  4. Mom2MissK Says:

    We’re coming up on the seizure meds decision again now too and I sympathize with how hard it has been for you. I hope my husband and I can come to our “perfect answer” as well as you and Dave. Maybe we won’t agree, but we will have peace within our family — and that is all that matters.

    I also wanted to offer my hope and prayers that the “powers that be” are kind to your sweet Dawson. Hang in there.

  5. Dalton Says:

    When I initially commented I clicked the “Notify me when new comments are added” checkbox and now each time a comment is added I get several e-mails with the
    same comment. Is there any way you can remove me from that service?
    Bless you!

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