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

.
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28 thoughts on “When the storms don’t cease

  1. What disheartening news. I’m so sorry that the seizures have been returning!

    As you mention all the options you’ve exhausted, one thing you didn’t say anything about was dietary approaches. It may not be a good match for Rhema — I have a hard time imagining Joy on the ketogenic diet, though we did manage to try a low-glycemic-index diet at one point! — but I’m wondering whether and how it’s figured into your conversations. There was an article in the NY Times last week, http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?_r=1&hp, that featured a success story (and quoted Joy’s neurologist, even.)

    In my prayers, as ever.

    • thanks Joymama. our neuro has never suggested ketogenic. but you know i’m a believer in dietary approaches. thanks for the link.

  2. As Joy asked, I was thinking about dietary changes too. My kids and I are on the “Specific Carbohydrate Diet”- not for seizures but for other concerns- and the difference in my son with ASD is out of this world. We are going to have to get that coffee and get together. Any dietary change/restriction can be hard- but it can also be the breakthru that helps to change the landscape. Has she had a DAN panel? I mean screening of enzymes/proteins/etc… I know DAN docs do a large work up- which maybe Dr. C has also- but it can help families target deficiencies or adjust for excesses. HUGS to you guys. NOT the enws I was hoping for. :(

    • yes, rhema has had a DAN panel and a whole work up done by Dr. Kenneth Bock. i’ve heard great stories about the ketogenic diet, although strangely our neuro has never suggested it. rhema has been on the GFCF diet for years. some time ago i considered doing ketogenic, even though it seemed overwhelming to do both ketogenic and GFCF. also, i haven’t heard of many LKS families having success with it… but i’m definitely willing to try it at this point. i’ve heard Children’s Hospital Boston has a great ketogenic diet program. we’ll see. thanks gretchen.

  3. I am so sorry that Rhema’s seizures are back, and with such a vengeance against her. It makes the progress that she has made all the more incredible and miraculous! I will be holding her close in my prayers that the storms in her brain will be replaced by His perfect peace!

  4. She is an incredibly strong little girl. Can’t even imagine trying to function without restorative sleep. And she goes to school and therapies all day and works through it all despite the storm. She is amazing.
    We are praying for you and Brandon and the decisions you are facing. We are praying for a miracle for Rhema.

  5. I can’t imagine how you felt because while Boy Wonder is profoundly autistic we have escaped the seizure demon.

    I don’t pray often or for many but for you and your beautiful girls and husband I do.

    and I hope the EEG is wrong just like Pixie Mama.

    xooxoxox

  6. I ached for you all reading this, wishing you strength and sending lots of prayers your way. Thinking of your beautiful family.

  7. J,

    I am thinking of you and your family.

    Even before I got this news, I was thinking of you so very much.

    A part of my heart is with you.

    Love from TX,
    Leah

  8. this took me back.

    those first days in doctor’s offices, in hospitals, in development centers.

    terrified.

    unknowing.

    what i know now, looking back, is that i had no clue how much my girl could and would achieve.

    but i think you do.

    you appreciate who she is and how far she’s come.

    you’re in my thoughts and prayers. all of you.

  9. The storms…blinding and deafening and pushing you off course…I can feel the whip of the wind, of the words that shock the system~

    and yet, instinctively, you know where your peace comes from and so you swim and trudge through the muck and mire and reports and websites and doctors and diets and well-meaning suggestions, and advice that form their own type of funnel cloud…

    and you dive into the Shadow of an Almighty God with no less fear that when you began, but with a magnetic hope that is somehow drawing you in.

    It may be brief. It’s okay though. You can go back. He isn’t going away.

  10. Ahh my dear sister your love for Rhema is perfect. Let it cast away your fear. It is from God. Your storm has not ceased and if anythng you are in the eye of this storm. But I am told that in the eye of the storm there is a strange quiet calm and a peace that goes above human understanding. I ask God for that for you. I ask for it in my Angel niece tonight. From the one who created the brain. God has you both there in that storm and he abides with you there. I am in awe of his ability to keep you there, to have kept you there and sustained you there. All of these six years with that same unmovable faith and your world crashing around you. Do you remember our old youth choir song lyrics Nealls? “I opened my mouth unto the Lord and I won’t turn back. I will go, I shall go, to see what the end is going to be.”

    ~Mark the perfect man, and behold the upright:for the end of that man is peace. Psalm 37:37

  11. I’m so glad you have such good and worthy support here, and, that Brandon is physically present for you.

    I know of/follow quite few bloggers who either use the keto diet or are intensely working against seizure monsters.

    Let me know if you want their urls.

    Love and prayers.

  12. Well, bless your sweet heart, good mother, and bless Rhema’s as well. I can’t imagine the pain and suffering you all are going through at this time; it just doesn’t make sense to me, and if I could remove it from you, I would.

    My prayers will now be more intense for Rhema, and I am holding onto the hope that our Lord will work this out for all of you. In my video today, I talk about Jehovah Shamma… the Lord is There. Perhaps you need to hear it as well as anyone does. I know I certainly did. In addition, you are the winner of Leah’s study. Husband drew from a large pile of names. I prayed earnestly that the right woman would receive it.

    I see now that my prayer was answered.

    I’ll have it to you soon. Let me know if you’re address has changed.

    peace~elaine

  13. Oh Jeneil, I’ve struggled to know what to say. I’ve imagined the heartbreak I would feel if I got that news about my own little girl. All I can think of to pray is, “Father let your kingdom come on earth as it is in heaven.” I pray that we see the reality of His kingdom and His power in Rhema’s body.
    And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you. Romans 8:11.

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