Lessons Learned

Lessons learned on the ketogenic diet, in no particular order:

  • Screen Shot 2014-09-20 at 10.30.30 AMCartoned cream can be clumpy.  A great deal of fat can be left behind, stuck to the sides of the paper carton.  We open the carton, scrape out the solid cream stuck to the sides, and transfer it all into a mason jar. There we mix it up gently as best we can. Then, we like these reCap lids for pouring cream out of the mason jar (get the right size for your jars). Nora had a bout of breakthrough seizures after several seizure-free months early on the diet, and I strongly suspect this was part of the problem.  Because of all the fat being left behind in the carton, her ratio would have effectively been quite a bit lower than our target of 3.5:1 at the time.
  • Keto-food superstars.  Foods that are fantastic for the ketogenic diet:
    • Base: avocados, macadamia nuts
    • Sweets: raspberries, strawberries, blueberries, dark chocolate (85%), red peppers
    • Protein: cheddar, eggs, ham, turkey, bacon
    • Flavorings: no-carb peppermint and vanilla flavorings, and cocoa powder for making cream in to “milk” or chocolate “milk”
    • Fiber: low-carb high-fiber tortillas, raspberries, avocados, Flackers, flax meal
    • Fat: butter, cream, macadamia nuts, coconut oil, kalamata olives
    • Low-carb: pickles, seaweed snacks
    • See this post, Quick Keto Meals, too.
  • Fiber.  We consider fiber to be the fourth macronutrient (along with fat, carbs, and protein).  It serves three very important functions: helping with constipation; helping to give weight and texture to a meal; effectively increasing the amount of sweet tasting foods.  This is because “net carbs” are what matter; that is, the total carbs minus the fiber.  This is one reason why raspberries are such keto superstars: they have plenty of carbs and delicious berry goodness, but they have a very high fiber content, which reduces their effective net carb count, which in turn allows Nora to have a lot of them.
  • Equipment.
    • The US Balance US-TT1000 scale is great.  It’s easy to use for home, and it has a built-in protective lid and runs on batteries for taking on travel or to a restaurant.
    • Small rubber spatulas help you scrape the full measured amount of food out of a dish and serve it to your child.
    • Screen Shot 2014-09-20 at 10.04.22 AMSmall silicone pinch bowls. We like these, made by NorPro.  They are microwave-safe, so you can melt a small amount of butter, coconut oil or dark chocolate for drizzling over other foods. You can thaw a small amount of frozen berries to mix into cream or yogurt. They are sturdy but flexible, so you can cream butter into cream cheese or nut butters for a smooth high-fat spread. You can scrape them clean with a butter knife or spreader to get all of the fat out. And they are cheap! Order them online or buy at a kitchen store. We have 8 and use ours everyday.
    • Screen Shot 2014-09-20 at 10.09.01 AMSmall spreaders (also called cheese spreaders or hors d’oeuvres knives) pair nicely with the small silicone pinch bowls. We have these cheap ones and they have worked fine. If you have a small child who can self-feed, they can use the spreaders themselves to put butter+nut butter mixture on a Flacker, for example. They work perfectly for scraping the silicone bowl clean.
    • Ice cream pop holders are wonderful. You can make very simple ice pops or add a bit of no-carb drink, one crushed raspberry, or cream to make a quick frozen treat. Any frozen keto treat will freeze solid, so you might as well make it a pop and let your child eat it slowly. For kids adjusting to the diet, this can be a real treat and make them feel like they are getting more to eat because it lasts longer. You can find more on our ice cream pop mold recommendations here, our post Cook’s Little Helpers.
    • We have also collected a lot of small dishes. We actually use one of the IKEA play sets daily. They are ceramic, food-safe, dishwasher-safe and microwave-safe. Serving sizes are smaller on the keto diet and it’s ridiculous to put Nora’s servings into regular sized bowls.  Kid-sized plates and bowls are psychologically helpful as it makes the keto meal look fuller.  They also fit nicely on the scale.
    • On the topic of dishes, we often let Nora choose a small dish if we are out shopping and need a little reward pick-me-up for good behavior. Many grocery stores carry some dishes. Maybe a little whisk, cream pourer, ramekin, or even a pretty napkin or candle that she can pick out. Several fun dishes have entered our collection, and the small meals made in the special dishes make the food feel a little more fun and special.
  • Restaurants.  You can eat out at restaurants if you are careful and have appropriate expectations.  Sushi and seafood restaurants work great as salmon sashimi, edamame and crab are all very keto friendly (be careful with fish, to be sure it is only grilled or poached).  Another good option is to order a burger at a grill with no bun for your keto-kid.  Typically we have the meal pre-calculated and pre-packed except for the protein portion, which will be supplied by the restaurant.   We’ll weigh what we need of sashimi or hamburger at the table using our portable scale.  There is of course some risk of hidden carbs, but we find it to be reasonably safe if we are at a restaurant with a menu we know well.  I think meat from the restaurant — as opposed to something carby — tends to be a safer bet overall as it is usually prepared with nothing additional other than some fat or oil for cooking. However, many restaurants with a kid menu will have carrot or celery sticks as a side option, or possibly apple slices. Salads with dressing on the side can also get you greens and cucumbers to incorporate into the meal.  You can always ask the server or cook if any additional  information is necessary. It is also courteous to inform your server that your child has dietary restrictions, so they understand why you are dissecting her meal and giving her a little extra food from home, such as cream that you have brought with.
  • Consistency.  There is no cheating on the ketogenic diet.  Early in the diet, ketosis is fragile and the metabolism is eager to switch back to glucose-mode.  Even a small amount of extra carbs can open the door for breakthrough seizures.  Consistency allows for better troubleshooting too.  Which brings us to…
  • Breakthrough seizures.  Expect breakthrough seizures and a few rough periods even after extended periods of success.  It seems that everyone we have talked with has had the experience of several weeks or months of good seizure control, followed by a period of loss of seizure control, followed by regaining seizure control.  When this happens, keep your spirits up and look for any recent changes or anomalies (such as the clumpy cream issue).  Be strict and rigorous and keep going.  Seizure control will likely come back.
  • Even daily ratio.  Consider applying the ratio evenly throughout the day.  Early on in Nora’s treatment, before we went to a full ketogenic diet, we were very lax about what the ratio was during any particular meal, so long as the ratio was met over the course of the day.  This means you could have a very carby, low-ratio morning and a very fatty, high-ratio afternoon, for example.  It seems that seizure control improved when we evened things out.  The one exception is at dinner and bedtime, where dinner is usually low on the ratio, and bedtime is higher, so that we can get a last chunk of fat into her to last all night.  We made this change after some early morning tonic-clonic seizures in the spring of 2012.
  • Routines and expectations.  Establishing routines and expectations ease the day-to-day grind.  For example, Nora has three routines around supplements: baking soda in the morning after breakfast and in the evening during teeth-brushing before bed; calcium in her bedtime cream; and a multivitamin and calcium in her morning snack B^3.  She’s not crazy about taking the baking soda and the calcium, but now that it is a well-established routine, there is no more fighting about it.
  • Keto-friendly alternative sweets.  When possible, try to have a keto-friendly alternative for your child at birthday parties and other events where ice cream, cupcakes, etc…are served.  This requires forethought and planning, but is huge for the psychological aspect for your child. If you can find out what kinds of treats will be served, you can make something similar. However, Nora now likes to just pick her favorite treat to bring along, even if it is different from the party treat. It’s still natural for her to admire the other treats, but you can help to…
  • Help your child understand the restrictions.  We are very sensitive to this and we stress frequently to Nora that although her diet imposes some limits, it is still a very healthy diet with many truly delicious meals, and many people have some sort of diet restriction.  When we first started the diet, Nora really took to a book called “The Princess and the Peanut Allergy.”  She strongly identified with the food restrictions of the main character and the struggles and efforts of her friend to accommodate her.  Try to help your child see the diet restrictions amongst your family and friends to help them understand that having some sort of restriction — whether it is a nut allergy, gluten intolerance, upset stomach after eating certain foods, low-sodium diet, etc… — is normal.
  • Solidarity!  Eat keto-friendly yourself.  Eating meals that look similar to what your child eats will help them feel better about the diet.  Skip the bread and sugar; eat nuts, protein, vegetables, and fruit.  As a happy side-effect, you may very well feel better and lose weight.  Christy and I have both dropped about 15-20 pounds when we modified our eating to be more like Nora’s.  Honestly, there have been many times after putting Nora’s dinner together (e.g., skillet-fried ham-and-cheese, avocado, red pepper, nuts), I’ve thought “I want that!” (Christy says: It takes all of my willpower to not eat Nora’s cheddar crackers!) Also, don’t eat the birthday treats at a party. It’s better for you and helps her feel like she’s not the only one.
  • Don’t expect miracles.  Be happy with improvements in quality of life.  We were one of the lucky ones that got full seizure control.  But even if Nora still had some seizures (and I must accept that she might have more seizures at some point in her life), her quality of life would be much better than it was before the diet.  If you are considering the ketogenic diet, chances are you are in the difficult group of epilepsies.  Many of these epilepsies come with other problems too.  The ketogenic diet may not be a miracle cure, but it could still be a great help.
  • It’s not “hard.”  It is different.  If you think the ketogenic diet might help your child, don’t accept any statement that the diet is “hard” as a reason for not trying it.  I wouldn’t say the diet is hard.  Epilepsy is hard.  The diet is a tool that may improve your child’s quality of life and development.  (Remember that if your child has failed two anti-epileptic drugs, the diet is statistically more likely to help than a trial on a third drug. Also, certain epilepsies respond particularly well to the diet.) However, the diet does require some changes to your thinking and expectations.  Once you get your routines down and everyone gets a few months to adjust, the diet is not significantly harder than having other diet restrictions.  Just different.

I’d like to make this  a “living” list.  To all of our keto comrades, I invite you to email us or comment on your particular lessons learned.  I’ll add them to the list above.

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12 thoughts on “Lessons Learned

  1. Great post. We started keto this last March. The only thing I would add is “fun” kitchen tools. I barely believe the mileage I am getting out of the happy face spatulas I splurged on.

  2. Just found your site, thank you. We are considering this diet for our daughter who has mynoclonic seizures daily and the two medications that she is taking are not reducing them.

  3. She is on keppra now and we are weaning her off Zonagram it did not reduce the myoclonic seizures she is still having about 25 a day. They want to start her on another medication but I asked about the diet and they said i could try it but they thought that the medication would be more effective. But she did say she would get me an apt at the Ketogenic clinic if I was interested. After all the information that I have been reading this weekend I am calling on Monday to schedule an appointment.

    • Maryann,

      That sounds prudent to me. Generally, once two medications have failed to control seizures, the diet is more effective than a third medication. (But of course you should continue to stay in consultation with your neurologist team as they may have additional information toward the decision.)

      You don’t really have anything to lose in trying the diet. Try it for three months and see if it improves your daughter’s seizures and development.

      25 seizures per day is about what Nora had when she was seizing the most. Does your daughter have a diagnosis?

  4. Her diagnosis is generalized epilepsy,refractory, developmental delay and hypotonia. I am so glad that I have found your site and the Charliefoundation site the information has been helpful. I think I want to try the diet instead of more medications. As we have been weaning Emma ofthis current drug she seem to be less tired and she is more animated. My husband and I have been reading as much as we can about epilepsy and different causes and treatments and I am surprised at the high percentage that there is for not finding the cause.

    • Maryann,

      Yes epilepsy can be extremely frustrating in that well-defined causes or treatments are frequently unknown. The mechanism of operation for many anti-epileptic drugs are also frequently not well understood. (The exact mechanisms of the anti-epileptic effects of the ketogenic diet are not well understood either.) It sounds as though your daughter has a complex diagnosis and is facing several challenges, so it is hard to say what impact the diet will have. However, as I said before, I think you have nothing to lose by trying. I’m hopeful that you may see at least some improvement.

      Hang in there.

  5. Hi Ted,
    We have our appointment with the doctor that runs the ketogenic center here. I am excited it start. Emma is doing well she is walking, saying words and she is very determined to keep up with the other kids.
    I am sure once we start I may have questions for you and you wife.

  6. Hi Ted,
    We are going into the hospital to start Emma on the diet in 3 weeks. I am excited, anxious, scared and hopefully. I am reading two books now to prepare and trying to gather as much knowledge as I can. When you started the diet was it hard to get Nora to get the foods? And all of it? What did you do if she didn’t want to get what you made? Emma is a pretty good eater but she is a toddler and there are times where she just won’t eat. Is there any advice you can provide?
    It is great to see the progress Nora has made, so exciting for you family.

    • Maryann,

      There is definitely a transition period — for everyone — that lasted something like 3 months or so. You will have foods that you think should be great that she will reject, you will have foods that she initially doesn’t like but eventually accepts, and you will have some all-star foods that she will love (or at least accept) that you will lean on heavily. You will also have foods that come in and out of favor over time. So you really have to be both persistent and flexible; the proverbial reed in the wind.

      There is no doubt the initial period is challenging for both parent and child. The good news is that the adjustment period is also about as long as the period to determine if the diet is going to work or not. So buckle down for a commitment of a few months. If the diet is working well, then any difficulties or adjustments necessary to live with the new routine will be well worth it and you’ll be motivated to continue. If it is not working, then you can simply abandon it or switch to something less restrictive.

      Also, it seems that although there are general strategies and guidelines that work well for many keto families, many of your routines well end up being highly customized for your family. It just takes time and effort and trial and error to find those successful routines. There isn’t really a single correct way to do it, but instead some correct way for you and her, and the only way to find that is to make mistakes and make corrections. So don’t get discouraged and keep at it! Kids are tough. If the diet works, the impact to their quality of life of having to learn to eat differently is nothing compared to the benefit of seizure relief in the grand scheme of things.

      But all that advice is pretty general. To answer your questions more directly, yes, Nora had a transition period too. She definitely missed grains and bread right away; we recall her lying on the floor moaning for toast when she was first entering ketosis. I remember that we used a mix of both cajoling/bribing and tough love. For example, I could often get her to eat all of her meals or snacks if I promised to read to her while she ate. In fact we still do that for her bedtime snack; even though she now thoroughly enjoys her bedtime snack, the routine remains. Also sometimes you just had to simply provide the meal you worked hard to create and that was that. Sometimes she might protest, but eventually she’ll have to choose between starving and eating and she will eat. (Honestly the very worst battles here were not over food but over taking medication, particularly Depakote because it was very bitter.) But as with all things parenting, you dance on this line all the time and adjust your strategies as you go. Christy also really does an amazing job of creating keto versions of grains and treats, and that helps tremendously. I think providing a variety of tastes and textures is very important too.

      I would probably council to err on the side of bribery/cajoling than tough love though. Ultimately you’ll very much need her cooperation and compliance, so the more you can praise and encourage the good things, and ignore/weasel/bribe/adapt your way out of the difficult things, the better.

      Last thing: it seemed to help Nora greatly to understand that other people have diet issues too. For example, in your family you probably have people with various allergies or intolerances. Use those examples to help her understand that many people have to make choices about their food for health. Nora in particular really liked a book called “The Princess and the Peanut Allergy.”

      Let us know how it goes and we’re happy to continue to try and provide advice.

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