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Post-keto addendum

7 Apr

Well, speaking of EEGs, I got this e-mail from Jade’s neurologist not 10 minutes ago. Really, it couldn’t get any better than this.

Hi Fawn,

I have received the ambulatory EEG results. The EEG looks great!! No epileptiform activity seen. No seizure.

I can arrange for see her in follow-up via telehealth in about 6 months time. This would save you guys the trip from coming back down to Vancouver.

Best Regards,
Sia

After the ketogenic diet

7 Apr

I’ve been meaning to post about Jade for months, but here we are at 3 months post-wean and I’m just getting around to it. But hey, Michael actually did post about what it was like for Jade to come out of ketosis. It was pretty fantastic for her to have her first “normal” Christmas dinner ever. And in January, we went to Disneyland, a trip we just could never face while we were still doing the diet. Both girls were beyond thrilled to meet all their favourite princesses. But I digress…

Jade GrowthJade’s body has changed quite a bit in the months since she got off the diet.

  • In the first three months since the wean, she grew over an inch. She has grown almost a whole inch just in the past month. Compare that to the one inch she grew during the whole of 2013.
  • She has finally just about the reached the 48-lb mark that allows her to legally switch to a booster seat.
  • In the past two months, her lips have returned to normal. For the 5 years on the diet, they were frequently cracked and bleeding, despite soaking them with warm water and sealing with lanolin twice a day.
  • Her energy level, which we thought was quite good on the diet, has gone way up. This means she’s become rather fidgety and has a hard time sitting still (at the dinner table, for example) which was never an issue before.

Jade is very much enjoying eating as much as she wants, and I’m thrilled that she no longer has to go hungry, which was a problem between meals over the past couple of years. Unfortunately, her frequent stomach aches have

In February, I accompanied Jade to the BC Children’s Hospital for her first EEG since getting out of ketosis. It was okay, but they did observe a couple of epileptiform discharges… that is, some abnormalities in Jade’s brain waves that are not seizures in themselves, but suggest she is predisposed to seizures. (Well, of course she’s predisposed to seizures; we know that because she had them.) The neurologist told us she wouldn’t panic about these because many people may have these abnormal brain waves with absolutely no consequence.

What bothers me is that Jade’s previous two EEGs were, as far as I know, amazingly normal. Last week, Michael and Jade returned to the hospital and did a 24-hour EEG. We haven’t heard about the results from that yet and am hoping for a call from the neurologist soon.

In the meantime, we are pursuing these chronic stomach pains, testing a theory that they are related either to food intolerances or dysbiosis…

For me, weaning off the ketogenic diet has been both a huge relief (packing school lunch is sooooo easy now!) and frightening. Just as the hardest part about starting the diet was the psychological impact, the hardest part of weaning is the feeling that our safety net is gone. All kinds of seemingly small things get my guard up. Last month, Jade developed a strange habit of yawning or gasping between every few words while talking. I immediately started to wonder if this could be some kind of seizure. It has since disappeared. The neurologist saw a video I took and didn’t think it was seizure activity.

I’m not sure how long it will take me to stop feeling jumpy. But I’m trying not to worry. And mostly succeeding. Overall, we are happy to have this chapter behind us. And Jade is thrilled and thriving. For now, that’s what’s most important.

It’s after midnight

15 May

…that makes it May 16th.

Three years ago today, I recorded 2 tonic seizures in Jade’s logbook. Those were the last seizures we ever observed. Somehow, maybe because the diet was and remains so consuming and rigorous, I can’t fully comprehend that span of time.
But I know, academically at least, that 3 years is a big milestone.
And I realized earlier today that even though there are a number of Jade’s medical issues that continue to make me anxious, it’s been a long time since I fell asleep straining to hear a gasp in the night, counting another seizure. It’s been a long time since I watched her and ached over her constant fatigue from fighting seizures, and over her sedation from fighting her drugs. It’s been a long time since I’ve had to hover by her side, waiting to catch her in case a drop seizure snuck up on her to violently throw her to the ground.
Today she is going to audition for the school talent show. She’s planning to dance. She’s never taken dance, but that doesn’t matter. She believes she is wonderful. She believes she is special. She believes she is smart.
She knows herself. And she doesn’t remember having seizures.
I do. But, after three years, some of it is starting to fade, just a little. And all I can say is… thank God.

Past tense

11 Feb

Jade and I just got back from a whirlwind visit to Vancouver: down on Wednesday, home on Friday. (This whole month is a whirlwind, to tell you the truth, but I won’t tell you all about it right now. I just want to share with you the best moment of the trip.)

Jade’s regular neurologist is off on maternity leave, so we met Dr. Farrell for the first time. He’s a wonderful doctor, and I believe he founded the keto program at BC Children’s Hospital, so we knew we were in good hands. Jade had done her EEG in the morning, and Dr. Farrell came in to discuss next steps with us, including how quickly or slowly to wean her off the diet. Her EEG looked great and Dr. Farrell reiterated one characteristic we know about Myoclonic Astatic Epilepsy: that, if quickly brought under control, it is generally considered a childhood epilepsy.

But this is how he started off the comment: “The type of epilepsy she had….”

Let me say that again:

“The type of epilepsy she HAD…”

That is the first time any medical professional has talked about Jade’s epilepsy in the past tense. It didn’t really matter what he said after that. The fact that he had just called her epilepsy a thing of the past vibrated in my brain like a thing alive, and is still making me quiver with amazement.

It might still take a year — or even two — to wean Jade of the ketogenic diet, and I won’t feel like this is all really over until she is. But I feel like we’ve crossed an amazing threshold.

Epilepsy, past tense.

Perspective

29 Jul

It has been a hectic week.  Four of the five suitcases from our trip are still sitting, unpacked, on the basement floor.  I’ve spent a total of about 16 hours in the recording studio, which has been thrilling and exhausting at the same time.  Jade has been attending music camp for three quarters of an hour every morning, the sessions being just short enough that it doesn’t make sense to try to run errands as they unfold.

A few days after we got back, Halia came down with a fever and some kind of stomach bug and I got to reacquaint myself with the art of catching vomit with whatever happens to be available.  On top of that, she is in the throes of exploring preschooler independence, which manifests itself in saying mean things to Jade (which makes Jade cry), selective listening, tantrums, and teenageresque expressiveness.

“Halia, get off my chair,” I might say.

“Okaaaaaaaaayyyyyyy,” she’ll drawl back, her voice implying the rolling eyes she has not yet learned to do.

She’s a challenge for sure, and she tests my patience daily.  Hourly.

This morning I was thinking back to what Jade was like at this same age.  That puts us back in September of 2008, a time I try not to think too much about.  That was a month before Jade started on the ketogenic diet, a time where her seizures were getting progressively worse, the last month we had her in daycare before her seizures became so severe it was no longer safe to send her there.

I remember hearing friends bemoaning their children’s behaviour, who were doing exactly the same kinds of things Halia is doing now.  I remember thinking, “I would take those challenges over what Jade is going through.  Any day.”  I remember wishing I could complain about the same mundane things.

And here I am.  It’s exhausting, yes, but oh my… Right at this moment, I feel so damn lucky.

Shhh, pass it on!

17 May

Okay, I don’t want to be be too rambunctious about it, because we all know the universe is a tease.  But… (whispers) one year ago yesterday is the last time I marked down an observed seizure.

(Whispers even more quietly.)

That makes today Jade’s one-year anniversary of seizure-freedom.

I’m doing a very quiet happy dance. (But Michael isn’t!)

Epilepsy is… awesome?

30 Mar

If you are the parent of a child with epilepsy, I’ll bet you’ll love this post from the BC Epilepsy society: Epilepsy is Awesome.