Archive | Jade RSS feed for this section

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.

These girls in a nutshell

3 Mar

I couldn’t have made this better if I’d written the script.

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.

Parent-teacher interview

21 Oct

On Thursday afternoon, I took Jade back to school after the school day was done. We sat down with Mme. S for the first parent-teacher interview of the year.

Mme. S told us Jade was a joy to have in the classroom, and a very sweet girl. (We knew that, of course. *ahem*) Unlike many kids, she is able to concentrate on one task for a long time, and it can sometimes be difficult to get her to move on to the next activity of the day. (Yep!) She is not very enthusiastic about gym class. (Yeah . . . I identify with that, although Michael is a bit bewildered.) Did we have any questions?

Jade’s kindergarten teacher had mentioned that it can take Jade some extra time to learn things. So I asked Mme. S if she had any concerns for Jade’s learning in the classroom. She furrowed her brow. No, not at all. And she’s very enthusiastic about reading. (We knew that!) In fact, Jade was placed in one of the more advanced writing groups. (They’re learning to print, so I don’t mean writing novels, or anything.)

I don’t want to brag about Jade. I’m just so happy and so proud of her. After all the pummelling her brain took at the hands of epilepsy, she managed to heal, and she’s thriving. She’s excited to learn, she’s stoic about her special diet, and she’s full of life . . .

I still think she’s a miracle.

Autumn leaves

5 Oct

This is the very essence of a perfect autumn day.

Jade singing after breakfast

30 Aug

…to the tune of “Skip to My Lou”.

Moo, moo, skip to my cow
Moo, moo, skip to my cow
Moo, moo, skip to my cow
Skip to my cow my darling.

Off to oink, oink, two by two
Off to oink, oink, two by two
Off to oink, oink, two by two
Skip to my Lou my darling.

Follow

Get every new post delivered to your Inbox.

Join 74 other followers