Keto for seizures: food recommendation

At only 0.5 g carbs per half-cup serving (1/4 of the mix), this is a huge find for us: Simply Delish Jel Desserts.

We love it because the low carb count means we can fit this in as a snack for Lily, who is still on 15 g carbs per day. She’s never been a fan of Jell-O or other gelatin-based desserts, but sweet is sweet and snacks are snacks and to be pursued.

For Lily, food manipulation is important – being blind makes texture that much more important . The instructions call for a total of 13 ounces of water (3 cold, 10 boiling), and I typically now use a total of 10 ounces. That holds up better to fingers grabbing at them.

I’ll post later about trying to make these using sugar-free Kool Aid, and the experiments with various molds, but today’s double batch were prepared in cake pop silicon molds that I bought at Michael’s. The tray makes eight, so two are a single serving.

Note: having some tech problems tonight. Hope to come back to fix formatting weirdness and insert some links.

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Post 1000: y’all, I need some help

Lily is having a hard time with seizures, and now that I’m living so nearby, I’m becoming a little obsessed with finding answers. You know I’m a scientist. I know how to find and read research papers. I am not finding what I need on PubMed, though…yet. I am also feeling mild withdrawal from my favorite databases, as this is the first semester that I haven’t been working for a place that got me that access since I started college.

The help I want: guidance with primary/review papers – firsthand accounts from people with epilepsy who have used hormonal birth control at the same time – firsthand accounts from people who have epilepsy that affects sensation and muscular spasm in their faces/mouths. Maybe also people with epilepsy who can tell me about sensations that make it difficult/impossible to tolerate the sensation of wearing a shirt.

Let’s get to the details. Lily is on Depo shots, and spotting most of the time. We don’t have good data on the seizure intensity correlating with the spotting/flow intensity, but I am increasingly convinced we’d find it if I got the staff to record the spotting. Her teachers told us that most of their female students with epilepsy started having problems when they hit puberty; one of the main reasons I distrust Lily’s neuro is that he didn’t believe this, even when I sent a clipping with my parents from the NY Times‘ science page. But there’s definitely work out there on catamenial epilepsy.

The ketogenic diet seems to have gotten her to only having seizures between 5pm and 9pm (mostly 6-7, with some variation). We fear that her 9pm meds get her through the night okay because her body slows down, but her 9am meds aren’t lasting because her body revs up. If this theory is at all plausible, it overlaps the possibility of the menstruation-related metabolic shifts that seem to be a known thing.

I want her off Depo. I’m on Seasonique, successfully, so I know there are options. I want that to be the answer – to settle down the metabolic waves, in hopes that the keto diet plus meds then prevents the use of rescue meds. It’s so great that there are fewer seizures – but the ones that happen are incredibly disruptive and really, really different (facial, possibly involving respiration, probably involving tingling skin, probably causing anxiety or panic).

Do you have advice on either how to help communicate this to her neuro, or how to find readings on PubMed? Or just tell me it’ll be okay…


Recipe test: keto sushi

We found an idea that excited us: keto sushi. Swap cauliflower “rice” for sushi rice, mostly, and watch what you include. Lily’s not a huge fan of sushi, but the rest of us kind of are, so this will let us include her more easily. It’s best to call this inspired by Japanese cuisine; this is not what you might expect from an authentic restaurant. If I get to visit Japan, I’ll tell you how well this approximates their famed cuisine!

Source 1: KetoConnect Sushi  Source 2: ruled.me Keto Sushi

Ingredients I used today:

  • 1 C cauliflower “rice”
  • 1 Tbsp coconut oil
  • 1 sheet nori (sushi seaweed)
  • 1/2 medium avocado
  • 1/4 C Persian cucumber
  • 1.5 oz cream cheese
  • two slices smoked salmon
  • small splash soy sauce

Method: text first, commentary with pictures later!

  • If you’re starting with whole cauliflower or florets, as I did, put them in some sort of food processor and quickly pulse to chop them up. I used a handblender food processing attachment.
  • Heat a frying pan to medium heat. When the pan is hot, add the coconut oil. When the oil is melted, stir in the 1 C of riced cauliflower. Cook until browned.
  • Transfer cooked cauliflower to a bowl and let cool slightly. Add a small splash of soy sauce for taste and color (1/4 to 1/2 tsp). Set aside.
  • Prepare the other ingredients. Measure the cream cheese, then cut it into strips. Slice the cucumber into matchsticks or other small strips. Same with the avocado.
  • Optional/recommended: gently heat the nori.
  • If you have one, put the nori on a sushi rolling mat – a makisu. If you don’t, use a piece of plastic wrap or a thin towel. Have the long side facing you.
  • Gently spread the cauliflower rice onto the nori. Leave about 1-2 fingers’ width free of rice along the far long edge.
  • Lay the other ingredients on top, near the edge closest to you, but leaving at least a finger’s breadth clear. Do not place fillings near the left and right edges; as you roll, they may move outwards. (They did for me!) I started with the fish, then put the cucumber on. I put the cream cheese on top of the fish, and the avocado on top of the cucumber, but leaning onto the fish/cheese.
  • Roll the long edge over, onto the “rice”, enclosing the fillings in your hands. Using a makisu or other device, squeeze the roll gently towards you. Roll and squeeze as you go to compress the ingredients.
  • Use a SHARP knife to cut. I cut the roll in half, then in halves again until I get the desired number of pieces. For today, I cut each half of my original roll into 8 slices.
  • Serve and enjoy! Or refrigerate.

We rated this about 3 g of carbohydrates per 1/2 of the recipe. (see below, please!)


Okay, let’s talk experience. This was NOT like my previous attempts to make myself sushi.

Let’s start with the rice substitute. I was expecting bigger chunks; it came out really fine. But decent, honestly.

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Raw cauliflower, run through a small food processing attachment for a handblender

The cooking went fast enough; I think cook time will vary with your preference for doneness and your stove. I didn’t give this a full brown, because I wanted the sushi to have a big more of a bite to it.

 

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Cauliflower, lightly browned in a frying pan

I didn’t follow the instructions in KetoConnect’s recommendation to let this all cool. When I’ve made rice sushi, I read that it needed to be warm – not quite hot, but super close. I suspect it makes the nori a bit easier to roll without cracking; I tried to make a poached salmon maki a few weeks ago with leftovers for my parents, and the cold ingredients were a little hard to work with.

Speaking of cold, I did place the cream cheese in the refrigerator to chill in between weighing it on a food scale. I wanted it to hold together.

I also tried to follow my cookbooks’ and favorite celebrity chefs’/documentaries’ advice, to “toast” the nori. We have an electric stove, so I just moved the frying pan I’d just used for the cauliflower back a burner to cool and waved the nori over the remaining heat.

Okay, I MAY have started by placing a nori on the cooktop and turning away to look at something, first, and make a really funky, curled piece of nori that I later ate for snack before gently toasting the nori in a more TV-cook show way.

The KetoConnect recipe says that you can layer the cauliflower as thick or thin as you like, but one cup of raw-then-cooked cauliflower doesn’t go very far at all. (I’m a trained scientist; I like metric measurements and using weights rather than volumes for this kind of thing. I’ve also watched too much of The Great British Bake-off.)

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Nori roll at bottom left, covered with riced cauliflower. Sliced cream cheese at top left. From top right to bottom right: sliced Nova lox, sliced avocado, sliced cucumber.

I may have used my spoon at little too hard as I spread; the cauliflower compressed some.

Then I put everything I was using for a filling out on top.

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Nori covered with riced/browned cauliflower, topped with lox, cream cheese, cucumbers, and avocado.

Then the hard part: I just moved, and my makisu is…somewhere. In a box. Probably not the labeled kitchen tool box. My parents don’t have a makisu. I dislike the kind of cling film we have now – and I have not enjoyed using plastic wrap when I tried to make the “rice on the outside” style of sushi in the past. So…I used my fingers to roll and squeeze!

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The greasy-feeling roll, rolled.

When I’d finished the basic roll, I stepped back. And felt grease on my fingers. Maybe it came from the ingredients? I don’t know. I just found it a little off-putting, and again, a difference from the sushi attempts I’d made previously. I sliced the roll in half and put it in the fridge to chill for a few minutes. I did not opt to wipe it off or anything. I just let chemistry do its thing.

Then I had fun with knives! I used one I thought was very sharp, but it got a bit sticky from the cream cheese, and I was panicking a bit because I was suddenly not so confident with my knife skills. So the last two pieces of the eight I cut from the half roll came out…squashed.

I should note that Lily’s been having enough seizure activity/spasming during dinner that I think it’s affecting her ability to chew. So I made the pieces small, to make it easier for her to chew. For myself, I’d probably have cut the whole roll into four pieces.

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Top left: half of a maki. Bottom right: slices of the other half of the maki. Top right: cream cheese-smeared knife.

You can see the mess I made with this first slicing effort in my picture.

At this point, my mother appeared in the kitchen. She handed me a knife she said was the sharpest one in the room, and I was happy to see the serrated edge. That turned out okay.

Now comes the BIG freak out: confirming the carbs, because I was then tasked with packing and labeling the food to take to Lily’s place when we walk over tonight. Right now, her team has asked that we keep her on no more than 15 g of carbs per day. This is NOT EASY, of course, because it means limiting the fresh fruits and vegetables the rest of the family is eating. (We have a local – and truly lovely – farmers’ market.)

  • KetoConnect’s recipe site says that a serving size is 1/2 of a roll. The nutrition label suggests that for that half roll, the net carbs come out to 4.23 g. There’s also a cool link to the MyFitnessPal site, with an invitation to look up the Ketoconnect – keto sushi item.
  • The MyFitnessPal description indicates that for half a roll, there are 9 g of total carbs and 2 g of dietary fiber – and we get to subtract the fiber from overall carbs to get Lily’s net carbs. That, you notice, is a whopping 7 g per serving.
    • I really hope that this is an entry error, and that it was supposed to be that level of carbs for a WHOLE roll.
  • I was playing around with recipes earlier and liked what I read over at ruled.me, which was what helped me think of smoked salmon as an ingredient. That blogger helpfully included a table that matched the ingredient list to all nutritional data. We cut the 1.5 roll size down to 0.5 roll and divided the net carbs from 5.7 g to about one-third of six grams, which gave us 2 g carbs per serving. (Both recipes used avocados and cucumber; the fish and cream cheese have no carbs, and the nori carbs are locked up in dietary fiber).

My inner scientist went a little crazy at that point. I like math, okay? And this is why I posted my slightly whiny post about keto for weight loss being really different from keto for epilepsy control; a small error probably wouldn’t push you out of ketosis in the weight loss method, but if Lily is taken over her VERY LOW level of carbs, ketosis is blown, and the seizures could be worse again. If they’re even better.

I may have yelled some of this while talking to my mom about the actual carb count. We labeled it 3 g, as I said, per serving, and I put them into Ziploc bags. (We got the wrong kind, or Ziploc changed their design: these are loaded from the short edge, not the long edge, in snack size. I don’t recommend using these to pack the sushi.)

So that’s my first try at food blogging for fellow sibs and folks using keto to control seizures! All of my pictures were taken with my iPad, by me, as I worked.

 


Venting: wanting more recipes for keto for epilepsy, not weight loss

I am trying to help my mom find recipes for meals that Lily will enjoy, or that will forestall her complaints. We need less complaining in our lives, and Lily complains a lot about foods she smells/hears us eating that she can’t have.

Mom just had me look at a low-carb sushi recipe. The text commentary was just so incredibly judgmental and relied on stereotypes about Japanese culture and cuisine. The carb count does not include the vegetable filling.

It’s just frustrating, you know? I need to find recipes as close to zero carbs as possible – Lily can only have 15 g of carbs per day. Or she risks seizures. It’s not about losing some weight; in fact, she’s started gaining weight from the high-fat component of the diet. (This is complicated by the fact that her staff are not supporting her in exercising as much as we want – she’s lost a ton of muscle tone in her legs.) It’s not like an extra gram or two just delays her goal, in other words. That extra gram could push her away from seizure control.

I know this emotion – this jealousy, the bitterness, the frustration – is incredibly selfish. I don’t want to have to do the math I need to do to help Mom, who needs help doing less per day. I am sad that I find encouraging recipe titles that have enough carbs to be something like two cookies for the whole day’s carb allowance. I’m scared for my sister.

I’d like to become better informed about ketosis so I know how much those small changes in carb intake are affecting my sister. I need to know what keywords will help me find the recipes I prefer more easily. I know I’m tired this morning, partly after a frustrating dinner last night during which Lily had her new combined bad behavior and bad-behavior-mimicking seizure activity. (At one point, her right arm was seizing, and possibly more of her body, which was hard to distinguish, as she was sitting cross-legged in her chair at the dining table.) I know the keto recipes for people using ketosis to lose weight are a helpful source of information and inspiration. Hopefully I’ll regain some calm and be appropriately appreciative…