I Dreamed a Dream

Every time that Madeline's medications have been changed, and I do mean every time, whether or not they reduced the number or frequency of seizures, the new medications have always changed the seizures in some fundamental and usually profound way.

Although Modified Atkins Diet for Seizure Control (MAD) is not a medication, it too has changed Maddy's seizures and I daresay, for the BETTER. Whether or not this change is permanent, only time will tell but if history is any indicator, the change is permanent.

The change: What used to be a noisy, violent seizure has become a silent, almost still seizure. So silent and still in fact that they don't wake me up. Typically when Maddy rolls over in bed it wakes me up and I look at her to see if she's seizing or shifting but for the last week or so, on the nights when she has had seizures, I've slept right through them.

The Roller-Coaster: Just a few days into the diet, Maddy's seizures disappeared. Then she missed her morning dose of medication (TWICE!) and her seizures returned. She got back on track with her medications and the seizures disappeared. Then she got food poisoning (not at home) and the seizures returned. As she's gotten better over the last three days, the returned seizures have been fewer and fewer each night, and they've been the quiet ones.

Amazing Development: This morning when Maddy got up she had two things to report. First, she had NO seizures last night. PRAISE GOD.

But here's the second piece of news, the AMAZING one: for the first time in more years than she can remember, she had a DREAM !

Her seizures so disturb her sleep that as far as she knew, she had stopped dreaming. Whether or not that's true, we have no idea but she has no memory of any dreams. Last night however, she had a very vivid dream about a book that her sister is reading and she remembered it in great detail!!

How is that for AMAZING!?!?! After ten years of seizures, my little girl is DREAMING again!!

First Week of Modified Atkins Diet (MAD)

What a rocky weekend!!

History: Maddy started MA on Monday 03/14. Monday night and Tuesday night, seizures were up.

Wednesday-Friday night - NO SEIZURES!
Saturday night - Stopped counting seizures at TEN. :(

Sunday morning: I was depressed because even though I'd said we were keeping our feet on the ground and our expectations low because we'd seen seizure honeymoons before, my hopes WERE high.

BUT...when Maddy looked at her medication box, what did she find? Her Saturday morning medications UNTAKEN. Whenever she misses a dose of medication, she has a 'bad day' or a 'bad night' and this alone could explain the return of the seizures. Hope returns.

Sunday night - ZERO SEIZURES!!!!!!!!!!

So...I'm not kidding myself anymore. My hopes are high and so are Madeline's. But the diet really does seem to be working!!!

The Long and Winding Road

Madeline, March 2011

It doesn't seem possible but it's been ten years since we started this journey through Epilepsy with our precious Maddy May.

In those ten years, she's been through daily seizures, countless EEG's, three VEEG's, more tests beginning with the letters 'MR' than I can possibly recall, every scan known to magnetic and nuclear science, a SISCOM, IVIG therapy, VNS implantation, two surgical consultations and a dozen different medications and yet, we're still just about where we started.

Now that her Doctors agree that we're at the end of what they can do for her, though they're still willing to re-run a test or two and throw in a new one for good measure, they ask us a question that we asked them almost ten years ago; have you ever considered the Ketogenic Diet? I can't tell you how it grieves my heart to hear those words. What happened to your initial assessment that she 'was not a candidate for Keto'? I go over it and over it in my mind and I wonder how different things might have been if only we'd pushed a little bit harder or asked just one more question.

But, the past is the past, and since it's our experiences that make us who we are, we wouldn't be the same people that we are today had things gone differently. I also take great comfort in the knowledge that all things work together for good to them that love God, to them who are the called according to his purpose. And so, we move on.

As God would have it, almost two months before Madeline's last VEEG hospital stay, I had begun researching the benefits of a low carbohydrate way of life for myself (for weight loss) as well as educating myself on the dangers of sugar, refined carbohydrates and processed foods (for the whole family) so when the question was asked, we were nearly ready to go low-carb as a family. This would no doubt make Madeline's adjustment an easier one because she wouldn't be surrounded by her parents and siblings eating foods that she cannot have. God is an amazing planner, is He not?

In mid-March we had a weekend long goodbye to sugar and carbs blowout and on March 14th, 2011, we all went low-carb and Maddy began the Modified Atkins Diet for Seizures.

Here's our first report:

Madeline (18) started Modified Atkins on Monday and we were getting a little worried as her seizures sky-rocketed Tuesday and Wednesday but then suddenly, last night, there were ZERO seizures!!!

I'm trying to keep my feet on the ground, knowing that for every step you take forward you sometimes take two steps back and remembering too that we've seen honeymoons before when new medications were tried but even so...it's been so long since she went a day without a seizure that I can't even remember when it was.

At any rate, she actually got some real sleep last night and I am overjoyed for her. :)