We visited Dr. Wray at Doernbecher yesterday for Nora’s 6-month Keto Clinic appointment. She is now 35 months seizure free and weaned to the Modified Atkins Diet. As usual, she ran through the standard clinic neurological checks and passed with flying colors.
Her blood and urine tests still have a few remnants of the diet that we hope will continue to resolve as we continue to liberalize her diet. Her blood acidosis level is still a little high and she still has the beginnings of kidney stones. The treatment for both of those issues are compatible and simple: plenty of water intake, and we can add some dietary citrate. I’m still doing some research into the citrate options; she already takes calcium citrate and we will have to decide if we start supplementing with magnesium or potassium citrate.
We will continue to wean her from the diet slowly by changing how we administer the diet. At this point, she is getting 40 grams of carbs per day and has no limits on protein or fat. We are only weighing and tracking her carb intake to make sure that she doesn’t exceed her 40 g limit, but we are not tracking her daily ratio anymore.
Our next step will be to estimate carb portions, much like diabetics are taught to do. Then we can shoot for an estimated 8-10 grams of carbs per meal, 5 times per day (still plenty of snacks in her day). We will give up the precision of the weighed foods, with the understanding that her carb intake will fluctuate more from day to day but will stay comfortably lower than a traditional US diet.
Nora will not see a big difference in her diet, but I hope that it frees Ted and I a little more. We have appreciated our little friend the gram scale, but I look forward to throwing together quick meals without consulting the spreadsheet and the scale first.
This is also an opportunity to start teaching Nora to feed herself. She would love more freedom and has appreciated the ability to get herself a piece of cheese anytime she is hungry. As she gets older she will appreciate more freedom, and we all need to learn healthy eating habits for our own bodies.
We have been going back to Doernbecher for check ups every 6 months, and now we will wait a whole year until we go back again, and Dr. Wray thinks that we won’t have to do those big nasty blood draws anymore! Nora is very happy to hear that news!
We do enjoy our trips to Portland. This time Nora wanted to go to the Japanese Gardens and brought her Japanese robe and umbrella that she got for Christmas. We also met up with another keto kid, Annie, who is moving from MAD to a higher ratio to get better seizure control. It is so important for families to support each other through this, because we have so much to give to each other that our doctors and dietitians don’t have experience to help us with: the daily grind of meal preparation and the learning curve. As we continue to wean Nora from the diet and wean ourselves from the gram scale, we plan to ramp up the support group.
We made it a Japanese themed day (on St. Patrick’s Day, no less, but at least we beat the crowds!). We had sushi at Masu Sushi, which felt like a fancy place but was low-key for lunch. Nora can eat edamame and sashimi until her belly is content, and here we found some dungeons crab rolls that both kids adored (Anders got the rice from Nora’s, a win-win).
After lunch we walked down to the renowned Powell’s City of Books. We found a fabulous book of Japanese folk tales, several other books picked by each kid, and a few games. Good times in the big city. Now we will have to plan to come back once and awhile just for fun.
Christy, Ted and Nora
First, congratulations on your success! Three years! So great,
I have been obsessively reading your blog for the past couple of weeks, since finding it while researching alternative therapies for my 20 year old daughter. My daughter has her first gran mal seizure in July of 2013. (In October of 2012 she “fainted” while studying in her dorm room. She fell out of her lofted bed, was rushed to the ER where we were told it was probably just a fainting spell. Nothing to worry about.) Nine months later, while sitting in a diner, she suffered a gran mal seizure We put her in the hospital for a sleep study were it was determined she had generalized epilepsy. We then researched the pros and cons of various seizure meds and she was put on 750 mg of keppra (375 mg 2x/day).
She is the greatest kid in the world. From the time she was born, she has always been affable, smart and kind. Although I have noticed no negative side effects from the medicine, it is killing me knowing that she is on a drug every single day that is altering her brain chemistry and who knows what else. I am the mother who feeds my kids so healthy–a play date snack was always kale chips or black bean brownies. If I feel like someone is getting sick, it’s a drop of colloidal silver under the tongue. And now I have a daughter on keppra. She was put on the keppra in July of 2013 and was completely fine–no seizures–until November of 2014. Sixteen months of no seizures! I was feeling totally complacent and was on the subway in London. We were standing on the subway when her eyes rolled back and she had a gran mal seizure! At that point, her neurologist increased her keppra to 1,000 mg a day two 500 mg doses daily. She did an ambulatory EEG about 4 weeks after starting the increased dosage. We were told it showed some “snowing”, but otherwise fine.
My question is, in your experience, can an adult benefit from MAD–to the point where she can get off the meds? I would love to hear your opinion?
Currently, she is is trying to follow LGIT. She started tracking her carbs last week to try to see if she could keep net carbs below 40 and was kind of miserable doing so. At this point, we don’t even know if there’s a benefit, so she’s back to eating beans and fruit. I took a look at some sample menus from hospitals where lunch consisted of a hot dog, diet orange soda with cream and iceberg lettuce smothered in mayo. This seems counterintuitive and, frankly, gross. Gotta think her black bean chili is healthier. Any comments are greatly appreciated.
Hi Traci, what a shock, and so sorry for you and your daughter. First off, I know how uncomfortable it feels to be using these strong drugs–it just feels wrong, but everything about epilepsy feels wrong. I have heard the most recent neurology rule-of-thumb that getting seizure control is the first priority, and if something isn’t working then move on to something else. We had to keep asking Nora’s doctors and pushing to move on to the next treatment when we saw one wasn’t working. For kids, I have already recently heard that dietary treatment is the third treatment to try (but I don’t see why you can’t try it sooner–just that if one drug doesn’t work, the chances of another drug working drop). You know your daughter and she knows her own body and is old enough to articulate how her body handles different treatments, so trust in that and be proactive about getting the care that she needs and making decisions.
I don’t have direct experience with adults, but I have talked with some adults who have tried MAD successfully, and the Charlie Foundation has some FAQs here: http://www.charliefoundation.org/explore-ketogenic-diet/explore-3/modified-atkins. They have lots of great resources, including a recent pamphlet about how diet generally affects epilepsy. There is some research out there and it does typically help some adults, but as with kids I am sure that it depends on seizure type/disorder, etc. So definitely do the research and talk with her doctors about diet therapy.
I feel that hospitals and dietitians still have some more work to do to make the diet palatable. This is where experienced parents and adults on the diet have made a great contribution. She certainly doesn’t have to eat hot dogs and diet orange soda! Unfortunately, that might speak to a “typical” Western diet, but is not really healthy for anyone!
With MAD you have a lot more freedom and your diet can be awesome. Black bean chili would still be very possible (just watch the bean count!). Nuts are great. Cut out grains and sugar as a first step and then go from there.
A word of warning, and maybe hope: When you first cut carbs down a lot (to 40 grams, you will certainly feel it), you go through a period of feeling awful. People call it the “Atkins flu.” If you can keep it up for a week, you typically start to feel better and have more energy. It’s hard for our bodies to make the transition away from easy carbs for energy, but when you do and maintain it you feel normal again. You have to push through that period.
Because she is not having daily seizure activity, it might be hard to tell if dietary changes are helping. If she had an EEG that was questionable (I don’t know what “snowing” means either), then starting a diet therapy and getting seizure freedom for a stretch of time is the first step, then hopefully an EEG will look better after some time too. If the improvement happened but the diet was the only thing that changed, that is a good sign that the diet is helping and you might be able to convince the doctors to try weaning keppra and staying with diet alone. But you will have to give it a good long trial and talk to her doctors about setting up those milestones to change her treatment plan.
That’s just a general roadmap, a way that I would consider talking to the doctors about going this route. It also depends on how receptive they are to diet therapy. Are you in the UK? If so, reach out to Matthew’s Friends (www.matthewsfriends.org/) for doctors, resources and support too.
Good luck–there are some great recipes on our site that I even like (and have to stop myself from eating to save them for Nora!) Try the granola! If there is anything that is in grams that you would like converted to common measures, just let me know. I should start working through the best recipes and posting that information. The most recent baked goods are certainly better because I’ve learned a lot about cooking in this process too.
Best to you. Stay in touch.
Thank you so much for your quick, educated response. Honestly, my gut is telling me the most important thing right now, while she is in college and has a busy social/academic life, is safety. So, I would not want her to stop the meds that seem to be working–although who knows if they are working or she just has a high seizure threshold.
I think that cutting out sugar and eating whole food is healthy for anyone, so that could be a first step for her. And luckily, she does not have a taste for sugar. We are meeting with a nutritionist who is (hopefully) educated on MAD, so it will be interesting to talk to her. I think your advice is perfect, and since she is doing OK right now, maybe slowing moving in the direction of MAD will benefit her and who knows where it will take her eventually. She is an adult, so the decision is hers. Hopefully, exposing her to these alternative medicines will help her at some point.
Who knows? — maybe those smoothies with coconut oil, flax seed, kale, and whole milk plain yogurt are helping. Can’t wait to try your recipes!
Do you know anything about Dr. Blaylock or Dr. Mercola?
Oh, and we are not in the UK. Was over there traveling at the time. (Perfect–an unfamiliar country where I knew no one and had no cell service!)
Excellent, I’m glad that was helpful. It feel so overwhelming and like such a tangled mess of a problem that it always helps to bounce thoughts off other people.
I do not know Dr. Blaylock or Mercola, I’m pretty limited in my doc knowledge. We’ve been lucky to get to OHSU quickly and in with the right docs from the beginning, and pediatric neurology is a different world too. I do think that it is useful to get references, so ask everyone you know to ask everyone they know. With something like this, you need to be a team with your medical providers.
At least you were traveling in an English-speaking country! We went to Chile for a month when Nora was on keppra and still controlled that way. I can’t imagine what it would have been like if we hit crisis then.
Our son has recently started the keto diet with the help of our doctors and dieticians. We are using the Charlie Foundation keto calculator. I was reading your post about Nora’s top 15 foods from Oct 18, 2012. Was wondering how you determined the ratio of avocado as 3.62:1? When I enter it in our calculator, or peruse the nutrition facts on the USDA nutrient database, the ratio is higher. Is it a different variety of avocado other than the Hass or Florida? More importantly…how did you learn how to figure the math ratios on your own? We are going to use the Charlie calculator, but, understanding more about how it works would help tremendously. Thanks!
Okay, I have done a bit more research and learned how the ratio is calculated. Protein+carb divided by fat. Maybe your numbers are slightly different because of rounding, but because that post was more geared towards MAD it doesn’t matter for you as much?
I’ll respond to both of your comments here–
Honestly, I don’t remember how we got that avocado number 3 years ago, we’ve just been using it all of this time. With all natural foods (heck, even packaged foods), you have to use an estimate for the nutritional information. I think we probably found a range of estimates just like you did and we picked the most conservative one to be safe. In the beginning we also had a kitchen gram scale with a built-in food database, so that it would give you the nutritional breakdown of a piece of food you weighed (cool, and maybe the source of that number!) I just looked it up in another database that we use and found it to be 4:1.
If you are using the Charlie Foundation calculator, go with those numbers. They have it down and it is working for lots of people. When I look up a food I cross-check different sources until I find some consensus number and I do check the Charlie Foundation numbers if I don’t trust anything else. We came into the diet through MAD first and were not given access to the Charlie Foundation calculator for a long time, so we developed our own methods with guidance, it worked, and our doctor was happy to let us stick with it. We had to find our own numbers then because MAD is basically DIY, and I’m sure we just stuck with a number that worked instead of re-checking things. If Nora had started on keto right away and we were taught how to use the Charlie Foundation’s website, we would have used that all along.
For the ratio, you almost have it: grams of fat divided by grams protein plus grams net carbs. How did we figure it out? It took a lot of reading and learning, probably longer than if we had been given the Charlie Foundation tool, but I’m happy with where we are today!
Let us know if you have other questions and good luck. Getting started can be really overwhelming, but you will begin to see how it works and get into a routine and it will feel easier. Please let us know if we can help.
First of all, thank you for having this blog. I’m writing from the other side of pacific sea, it’s truely amazing that you can reach to these many people. However, it’s also sad to know that these many kids/patents are suffering from this terrible epilepsy. My son is on mct keto diet. Same us Nora, we started with mad, which shows some result but not fully controlled. wr then change to mct version, after a few tweaking, we r almost two month seizure free. Then, bam, yesterday, another one. Although it’s mild and he recovered right after, I’m wondering if I should raise the ratio like you did to further help him. What confuse me is my current ratio is
Calories 1714kcal,protein 10.2% ,MCT 51.6%,total fat 74.2%,carbohydrates 15.6% 。Keto ratio 1:1.35. This is provided by our dietitiin, but I not sure how to increase the ratio. Adding more oil may be hard, I remember you said that we have to choose fatty food and take fat from there. Is that right? Also, should I go ahead raise the ratio bc this single breakthrough? Or I should wait？ sorry for the lengthy post! Thank you!
When we started with MAD, got some seizure control, then saw breakthrough seizures, our doctor gave us the option to try a new drug or to increase the ratio. His feeling is that increasing the ratio is like giving a higher dose of medication. We increased the ratio and Nora didn’t have another breakthrough, but that might not have been the only thing helping her. In the stories of kids that I have heard, it takes some time for the body to adjust to the diet and you may have breakthroughs for months until they gradually go away, with longer stretches between seizures and maybe different kinds. I’m a mom, not a doctor, so I’m just using the stories that I hear and can’t say for sure what will help. But epilepsy is different for every person, and not even your doctor can tell you what will happen next. You know your kid so you have to take in all of the information and weigh your options.
I’m not very familiar with the MCT version of the diet, I just know that you can get the same effect as a higher ratio with less fat when the fat comes from MCT oil. I think that you should talk to your doctor and dietician about raising the ratio a bit to see if it helps. In my opinion, the diet is easier to eat if you start with fatty foods (avocado, macadamia nuts, full-fat cheese), then add more fat as necessary from MCT or other oil, butter or cream.
If he is getting 2 months of seizure freedom, then the diet seems to be helping, right? Making sure that he is getting his carbs spread over the day and getting fat with every meal will help maintain ketosis, and get his body into the rhythm of keeping ketosis. It sounds like you are doing all of the right things, so keep your spirits up. It take a lot of patience and hard work, but it is worth it if you can see your boy through it!
Thank you so much for your prompt reply! Yes, patience. My doc’s assistance told me don’t think about outcome or what if, just do what I’m doing now. so hard! I will definitely talk with my dietitiin about the ratio. Maybe I should do a classic/mct combined kind of diet. Oh, may I ask if you have same ratio for each meal? My kid tends to have more episodes around noon before lunch, I’ve seen some people will have higher ratio during certain meal if kids have more activities around the time. Also, We don’t have ketocalculate here. I hope it’s not impolite, but would it be possible that I can use the spreadsheet you created for Nora and adopt it based on my ratio. Thank you!
I hope your dietician can help with the ratio and how to use both mct and other fats. We did try to keep meals the same ratio all day except that we used a slightly lower ratio at the evening meal and a higher ratio at bedtime. Nora’s last seizures were in the very early morning hours, so we gave her extra fat before bed to make sure she had enough ketones throughout the night. It might help to use more long-chain fats before bed to extend the ketone-making process and make sure to get a good breakfast that is low carb, high fat in to support ketosis through the morning. It is also recommended to spread the carbs evenly through the day, which might be especially important for you at breakfast.
I will talk to Ted about our spreadsheet. You saw that he posted a MAD spreadsheet, right? The older one that we used for keto diet is not in any shape to share right now so I will see what he thinks.