Autism, epilepsy and song

Your love is a symphony
All around me, running through me
Your love is a melody
Underneath me, running to me

~Switchfoot, Your Love Is a Song

.

My friend JoyMama has a darling daughter Joy who is Rhema’s “sister across the way.” Both our girls are window-dancers and are usually up to the same antics. They are the same age, and both have autism and epilepsy issues. Months ago JoyMama sent me a piece about the comorbidity of autism and epilepsy. According to the article, roughly one third of individuals with autism also have seizures.

JoyMama pulled the following quote:

“During development, the brain is trying to set up all these connections,” notes Ann Berg, research professor of biology at Northern Illinois University. “You’ve got these little neurons trying to sing to each other and then this crashing cacophony comes down over them.”

Then JoyMama wrote something that made my eyes smart and gave me goosebumps:

“Blessings on our beautiful girls and their hard-won songs…”

.

I’ve written about it many times here. Rhema. Her language, her life is a song. Hope calls it “talking with music.” We don’t know or understand the words, but her serenade is ever present. Like a long musical, she intones her heart-thoughts; she sings every emotion. It seems to be a melody for her, for us, for the morning and night, for toilet paper and rain and air and macaroni and blades of grass; she hums to the world.

And when I think about it, it kills me and inspires me that she keeps singing.

To date, Rhema’s epileptic condition has proven untreatable. She must endure several EEGs a year, and for a child with autism and the communication paralysis and anxiety and all the sensory sensitivities that tag along, the EEG hookup can be sheer agony. So it was yesterday, and I’m convinced she fought harder than she ever has.

Can I say? I wish we didn’t have to keep doing this.

For 24 hours a device in her backpack will record every spike and wave, every electrical blast in her brain. Just a few months ago the EEG revealed that the “crashing cacophany” occurs on average 58 times a minute for my girl.

She repeatedly takes my hand and puts it on her head. It’s her way of pleading with me to take those awful leads off her head.

“I’m so sorry, sweet girl. We have to keep it on.”


This is the face of autism and epilepsy.

And this is the face of a brave little soprano opening her mouth,

.

and singing through the storm her hard-won song.

.

When the storms don’t cease

Every year on the day before Thanksgiving we meet with Rhema’s neurologist. It feels like tradition now – to go to Children’s Hospital when the halls are less busy and Dr. C can spend extra time with us.

I’d done my research before the appointment. We’d talked over the pros and cons of keeping Rhema on her current anti-epileptic med. (I’ve written before about diazepam being the only drug to keep Rhema seizure-free. The downside is drug dependency with long-term use and Rhema has been on it for over a year). But when we walked into Dr. C’s office, I was ready.

And then the curve ball socked us in the gut.

“Her latest EEG was not clean. Far from it. In fact, her brain is spiking 40 times a minute, increasing during sleep.”

Hope was climbing over me, fighting Rhema for a toy.

Huh?

“It would seem that the medicine is no longer working. Her EEG results are even worse than before.”

We stammered. Really?

Brandon even asked if there was some mistake. Dr. C assured us that the test was accurate.

“I, I mean, we’ve seen some challenging behaviors lately… and some poor sleeping and it seemed like she’d lost some skills. But, but, overall she’s been doing well.”

Dr. C was scribbling notes, so I rambled on.

“Ever since she started attending Futures School her language has greatly improved. She understands so much more now, she’s learning to trace her name, and she can say single words when prompted!”

Dr. C was quiet while Brandon skimmed the report and I numbly searched for a snack for the kids in my bag. We’ve lost our trump card, I thought, her brain is now resisting the only drug that’s ever worked.

“What’s background slowing?” Brandon asked, looking up from the report.

Dr. C looked at us as if we should already know. “Well… it can indicate structural damage to the brain. And, you know, developmental and cognitive delay.”  

I laughed at this. I really didn’t know what else to do. That very morning I had dressed her in stylish 6X jeans and then scrubbed her mouth out after she ate a bunch of crayons while my back was turned. Yes. Developmental delay. But everyone else who knows and sees my girl – they see her in the context of the autism and the delays and the behaviors. They don’t know her apart from it.

But I still see something different. I still see an angel baby in my arms with the world at her fingertips. I still see her singing in the children’s choir, playing sports, going shopping with me, learning to drive, going on her first date, kicking butt in college, giving me a grandson. I still see my dreams, I still see my future, my very life in her.

So when you say ‘permanent background slowing is associated with poor cognitive prognosis’, it still knocks the wind out of me.

Sometimes I still don’t understand how this can be.

We discussed our options with the doctor. We’ve exhausted the anti-epileptic drugs. There are only two things we have not tried: ACTH steroid therapy or seeing if she’s a candidate for a brain surgery called multiple subpial transection (MST). The steroid therapy has a host of very unpleasant side effects and seems to only be effective for short periods of time. And I’m just not in the mood right now to be slicing up my kid’s brain. I gave an emphatic ‘NO’ to both.

We made plans for another EEG in a few months, but I felt like a chapter was closing. We’ve wrestled this seizure disorder since she was two years old. We’ve put her on drug after drug. At least for now, Mama says, No more.

We took the girls home.

 .

That night while Brandon was reading the Bible to Hope, Rhema crawled into my lap. She never does this. We’d given her a sleep med, and as I held her head in my hands, she slept. It was a gift.

I looked at my watch and counted to 40. Forty times a minute, her brain is seizing. Have mercy! Dr. C has explained that it’s like a radio station that keeps losing signal or a computer that reboots endlessly. He said that when she sleeps, the quality of her sleep must be very poor. Most of us just take sleep for granted. But drowsiness alone sets off an electrical storm in Rhema’s brain. I want to scream at the LKS monster that punishes my daughter every time her body needs to rest.

I just stared at her. So achingly beautiful, my little girl.

“I’m so proud of you,” I whispered. “What you’ve been able to do, what you’ve been able to learn considering everything that’s working against you. You’re amazing. You’re amazing.”

Brandon read from Psalm 4:8.

“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.”

Peace.

Please?

In the storm, You are our peace, Lord. Thank you.

.

(Been listening to this song ad nauseum called Perfect Peace by Laura Story.): 

stay close by my side
keep your eyes on me
though this life is hard
i will give you perfect peace

in this time of trial
pain that no one sees
trust me when i say
i will give you perfect peace

and you'll never walk alone
and you'll never be in need
though i may not calm the storms around you
you can hide in me
burdens that you bear
offer no relief
let me bear your load
cause i will give you perfect peace
stay close by my side
and you'll never walk alone
keep your eyes on me
and you will never be in need
though this life is hard
know that i will always give you perfect peace
i will give you perfect peace

.

The name

 

I’ve been studying Abram in the book of Genesis.

Abram. The name means exalted father, which once seemed like a cruel joke. Because he was not a father at all.

It was his heart’s desire to have a child, an heir.

And at the ripe old age of 99, God made a covenant with him and said He’d make him a father of many nations. His descendants would be as numerous as the stars in the heavens. He changed his name from Abram to Abraham. “-ham” means “many” or “multitude.” Thus Abraham = father of many nations. The name was given to him before his son Isaac was born. But Abraham, against all hope believed in hope. His name was a promise.  

.

Rhema. The name means spoken word, which once seemed like a cruel joke. Because she has autism and LKS, two conditions that make it very difficult for her to speak. At 6.5, she is considered pre-verbal. But like Abraham, I’m believing in the God of hope. Her name is a promise.

Is there something you’ve long prayed for, waited for?

.

After some discouragement over loss, it’s good to see the gains.  

And I had to share… 

her daily list of words (prompted and spontaneous) from school:

(Her wonderful teachers had to use both sides of the paper!)

.

I’ve started calling her Rhemaham.

Girl of many spoken words.

Juncture

I’ve collected lots of photos over the years of her in the hospital for EEGs. I’ve kept time in my heart and mind on all the effort spent making sense of the seizure activity in her brain.

  

The pictures remind me of our history, the long trail of medications in treating Rhema’s Landau Kleffner syndrome. Depakote, Keppra (aka Kepp’rage’, nightmare drug), Lamictal, Diazepam and combinations thereof and countless EEGs.

 

We’ve recently had a long period of respite in terms of Rhema’s epilepsy. But it has not been without cost. Just before Brandon deployed we made the difficult decision to put her on a high dose diazepam/valium protocol – the only drug that seemed to calm the continuous spikes in her brain. The medication can be highly addictive with long-term use. In fact, she went on it a couple years ago in the hospital and even though she had a clean EEG for the first time ever, doctors weaned her from the drug immediately and put her on another (non-addicting) anti-seizure med. The seizures came back with a vengeance.

We decided to go back on the diazepam long term, not knowing what “long term” meant but knowing it probably could not mean forever. We just knew this was a chance for Rhema. With her brain quiet, she could really learn and even gain language.

So it’s been over a year and I have not given much thought at all to spikes and absence seizures and EEG’s. Such a relief. In fact, only when I come across an old picture every now and then do I remember that we are on “borrowed time”.  

Last month when I called for a new authorization on Rhema’s anti-seizure med, her neurologist got antsy.

Time’s up. Time to deal. Time to re-evaluate. There’s always something, isn’t there?

We are at the crossroads again… facing what seems to me in my freak-out moments like an almost impossible decision.

Is the med still as effective as it was a year ago? Is she good and addicted now after a year on the drug? Will she go through some frightening withdrawal if we take her off? Will the seizures come back again? Will she lose all that she’s gained? Do we dare take her off?

Zero hour is almost upon us.

24-hour ambulatory EEG on Monday.

.

“O our God… we have no power to face this… We do not know what to do, but our eyes are upon you.” 2 Chron. 20:12 



.