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.

5 Responses to “After the ketogenic diet”

  1. Ted Brekken April 7, 2014 at 9:47 am #

    Wow. We’re coming up on that really soon. I’ve already started to feel anxious about that “safety net” being gone.

    Hang in there. You all have come so far. There will be bumps in the road — I have to remind myself of that too — but the kids’ll be alright.

  2. Kim April 7, 2014 at 9:52 am #

    I can’t even imagine that panic feeling ever going away ugh..its like were awaiting impending doom..going on to the Diet its frustrating as her seizures have appeared to be more agressive…I am REALLY hoping this diet works for us and works soon. I am SOO happy we got to see Michael and Jade at BCCH at the end of our week there to see the progress that can be done when the diet works!! Im so happy you and michael have offered all the advice and answered all our questions! Can’t wait to hear the results of her last EEG.

    • fawnahareo April 7, 2014 at 10:01 am #

      I know what you mean about that constant cloud of dread, Kim. I think about your family every day. It took us 18 months on the diet before we finally saw Jade’s last seizure. We had achieved seizure freedom for a bit (or thought we had) and then realized she had developed tonic seizures, which were new for her. That’s when we went all the way up to 5:1. I’m only mentioning this because it can take quite some time. There’s still lots of hope!

  3. nitadancesNita April 7, 2014 at 4:07 pm #

    (((Hugs))) and take a deep breath…you’re doing great!

  4. brekkenc April 8, 2014 at 10:53 am #

    Congratulations Fawn! You all have been such a beacon of hope and honesty throughout all of this. Thank you for sharing your journey, we all learn from you.

    I understand feeling jumpy. I’m there already, just thinking about weaning Nora. I think that instead of expecting it to be all gone, I need to adjust to a new or different type of worry about her. It’s totally normal to worry about our kids, we all do. We just have a different kind of worry. I’m working on getting it to a point where I can let it be there while being happy and reveling in her health. The anxiety doesn’t have to be all gone, it just needs it’s own place that doesn’t interfere with joy. You seem to always have a smile, and I appreciate that you can still share your feelings of anxiety and watchfulness too.

    You are awesome.

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