Tag Archives: ketogenic diet

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.

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.

Your life is easier than my life

12 Apr

This attitude is a pet peeve of mine. It annoys the hell out of me when I hear comments like this, whether it’s directed at me or at someone else. That other guy over there has it better because he’s got more money. She’s got it easier than me because she’s so pretty. He’s got a cushy job. She’s only got one kid.

WHATEVER.

Image from believe-toachieve.tumblr.com

EVERYBODY’s life is hard. We all take on as much as we can, and then we take on a little bit more, don’t ask me why. Even if you live the simple life, there’s not enough time in the day to do everything you want to do, and there are always outside demands. We are all struggling to find balance. We are all battling our own particular demons. We’re all fighting to stay on top of the day-to-day stuff. Even the kids. They are busy learning their own hard lessons.

Occasionally, I’ve encountered the opposite, with someone telling me she feels better about her own life because mine is so hard. Particularly when Jade was suffering countless seizures in a day, it was kind of a silver lining to know that some people might appreciate their own blessings a little more. And there are families I feel the same way about, who make me draw my girls a little closer and send up a little prayer of thanks.

I just recently had an epiphany, though.

Although I was doing a good job of reminding myself not to compare my life to anyone else’s, I was still falling into the trap.

Jade has been on the keto diet for over three years now. It’s done amazing things for her. And I am grateful. So grateful! I remember thinking, when we were in the thick of things, “If only we could make the seizures stop, life would be so much better again. Things would be easier again.”

And it’s true. I am so glad we aren’t holding our breaths all the time, waiting for the next seizure to hit. There is a lot of tension gone.

But guess what? Life isn’t easy right now. I have all sorts of new things to worry about these days. Not complaining: that’s just life.

And until this epiphany hit me, if you could read my thoughts, you’d have heard this one a lot, “Things will be so much easier when we can finally be off the keto diet.” In other words, I was looking at my future self and thinking “Her life is easier than my life.”

It’s true. There are things that the diet is preventing us from doing. Like taking Jade to Germany or to Taiwan to visit my family, for example. Or even going on extended road trips because I can’t bear the thought of all the preparation that has to be done in advance.

When keto becomes history in our daily life, I will not be sad to let it go. And life will be easier. In one sense. But I’ll bet there’ll be new things to balance and new challenges to forge through. Because that’s life.

So maybe I need to stop wishing we could be done with the ketogenic diet and just start appreciating, a little bit more, the blessings I have in my life now.

And thank God I am the capable person that I am.

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.

Everything’s louder now

16 Mar

Thursday morning I woke Jade up at 6:30, got her dressed in some warm sweaters, hat, mitts, and we drove to the hospital.  I had the flu and really shouldn’t have been at the hospital, but Michael absolutely had to work that day and I couldn’t really send Sonja to the hospital with my soon-to-be-anesthetized keto kid.

The surgery went smoothly, as expected, and although the Medazolam withdrawal was awful (crying, incoherent demands, shrieking, and general freaking out) Jade came through with flying colours, with two tubes perforating her eardrums.

The next day I was in bed, but I overheard Jade saying to Sonja, “Everything is louder now.”

Today we went to see Jade’s audiologist.  Lalia peeked into Jade’s ears and told her that her tubes were bright green.  She tested the eardrum for pressure, and for the first time since November, the eardrums didn’t push back.  Next she ran a test that measured the nerve response in Jade’s ears.  This is a test that Jade had never had before because it can’t be done when there is fluid in the middle ear.  Jade’s ears were perfect.

We’ll go back to see Lalia in 6 months.  “It’s so good to finally see your ears up and running!” she said to Jade.

I can’t believe this fight is over and suddenly we have exactly what we wanted: clear ears that hear the way they’re supposed to.  Just like that.

More than skin-deep

21 Jan

My friend Barbara wrote a post about skin last week, about how it acts as a protective barrier against germs and toxins.  But most of us also know (or believe) that skin is permeable; the degree of permeability is sometimes debated, apparently.

But if you’re the parent of a keto kid, you probably don’t care about the debate much.  You might think it strange, but we worry about our kids absorbing carbohydrates through their skin.  Here’s a interesting “whodunit” kind of story that is also a cautionary tale…

Michelle lived in the city but, during the summer, the family spent weekends at their beach house.  She did well on the diet throughout the winter, with a marked decrease in seizure frequency.  In the summer she again began having increased seizures, although only on weekends.  The family would go to their summer house on Fridays.  By Saturday, Michelle’s ketones would be low, and her seizures would increase.  Her parents turned themselves inside out attempting to find the reason.  They checked the foods, the environment, and finally decided she must be allergic to the beach and their pool.  They were about to sell the house.

At last, together with a nurse from Johns Hopkins, they again went over everything they did on Friday and Saturday.  “When we arrived at the beach, we lathered Michelle with suntan lotion,” they told the nurse.  Aha!  They checked the suntan lotion label: It was in a sorbitol base.  Apparently, enough sorbitol was absorbed through Michelle’s skin to affect her ketones and alter her seizure threshold!  After switching to a sorbitol-free suntan lotion, the family continued taking Michelle to the beach with no recurrence of seizures.

from The Ketogenic Diet, by John M. Freeman et al. — 4th edition

The online keto forums often have questions from new keto parents about which toothpastes, skin creams, and shampoos are “keto safe”.  Some parents even make their kids wear vinyl or latex gloves (and it’s not easy finding them in kids’ sizes!) when playing with play dough, finger paints, or other potentially carbohydrate-laden substance.

We let Jade play with play dough (she has to wash her hands afterward, though!) but I have found the skin cream thing to be more difficult.

We’ve a very dry climate up here in the Yukon, so lotion is a must.  I’ve used a variety of very plain lotions, but have never really been happy about their ingredients.  I’ve tried straight coconut oil, but it is (unsurprisingly) greasy on the skin, and I don’t find it absorbs very well all on its own.  There are a few places in town that make natural skin creams but to it costs too much to keep all the skin in our family covered.

I have started to experiment with making my own lotions.  The first two batches I made were a lovely consistency but started growing mold within a week.  Yech!  Just before Christmas, I tried a third time, sterilizing all my equipment and adding some natural anti-fungal ingredients (rosemary, lavender, and grapefruit seed extract) and — hurrah! — that seems to have solved the mold problem.  But after a few weeks, the water and oil started separating too much.  So it’s back to the drawing board for me… but I’m close, I can feel it!

The one thing that’s really causing me to procrastinate is, well, it’s no fun to wash lotion off spoons, measuring cups, and blender blades.  And this time I won’t have my mom to help me.

And you know, since we’re on the subject of skin, I read another really interesting post about skin this week, written my my gal, the one and only Scientific Chick: Dogs have owners, cats have staff, and children have rashes. Click on over there.  With a title like that, you know it’s going to be a fun read.  It even starts with a cartoon.

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