Ketogenic Diet

This is my October update, a little late…

I have continued to stick with the Modified Atkins Diet (MAD) as a seizure therapy. I’ve been on it for 4 months and it continues to go well.

This month I had a few bumps in the road. My seizures are still well controlled. However, I’ve noticed it is getting  a little harder on some days to stick with the diet. The most difficult thing is the fact that I feel like I’m always thinking about food and what I’m going to eat next! Towards the end of the day I’m thinking did I get enough fat, carbs, protein, and fiber today? I’m not measuring portions as much, but it is still often enough that it makes me focus on food. I still use the Carb Manager app to track these things, but it makes me crazy to always have food on my mind. Some people meal plan for their week or at least 3 days at a time. I found this hard to do because on some days what I planned a couple of days ago doesn’t sound good. I use Carb Manager to plan food one day at a time, but again this keeps me thinking about food.

Earlier in the month I got a little bit sick with a stomach bug. First of all, when you get sick often times seizures can get worse. If you have escalated seizures, one of the first things neurology will ask you about is if you have been sick or think you’re getting sick. When I know I’m getting sick I tend to worry because I know my seizures will get worse. They could be worse for a short time or weeks after being sick. Getting back to baseline after being sick is a challenge.

Unfortunately, because I was sick I did have a few more small seizures over the course of the 4-5 days I wasn’t feeling well. I haven’t been having any seizures during waking hours, but on a few of those sick days I had a few small motor seizures during the day. Since I don’t get sick very often I’m kind of a chicken and hardly know what to do with myself. Being sick was nothing like it used to be before this diet therapy. I got through the sickness much better than I used to with minimal seizures. I’m so thankful for that!

Because my stomach was bothering me, my eating was off. Since I couldn’t eat my usual comfort foods like chicken noodle soup, something simple like saltine crackers or toast, I had to get creative. As I’ve mentioned throughout this journey I’m a person who finds a few foods I like and rotates them. I did get concerned because of the high fat and my upset stomach. I wasn’t sure how I could keep my fat to carbs plus protein up to a ratio of 1:1 and remain in ketosis. I tested my ketones once a day over those 4-5 days and was always in the correct range that has worked so far. The nutritionist also gave me some good ideas. It has been so great to have someone to consult and learn from as I figure this diet out.

So what did I find to eat?

First, I ate a lot of eggs with butter. I left out the sausage and bacon I usually eat in the morning. I was able to eat a little Greek yogurt.

Second, we got creative made an egg drop soup.

1 tsp. of Better Than Boullion

1 egg

1 cup of water

2 oz. of canned chicken

I added sausage instead of chicken to this serving (way too salty!)

I also ate the 5 carb taco shells that I enjoy, whole wheat CarbBalance. It is a good source of fiber. I put cinnamon, butter and Swerve on it. I haven’t had to use a fiber supplement much but over the days I wasn’t feeling well I did.

I also switched over to unsweetened almond milk and have been drinking one or two glasses a day with 2-3 Tbsp. of heavy whipping cream. I didn’t used to like almond milk, but as I wrote last month I have to enjoy the small things and not miss the foods I can no longer eat. 

Another challenge this month was the fact that the joints in my toes have been sore. I went to primary care doctor and she didn’t really have answers. We did some blood tests and tested for gout, but everything was fine. I was referred to an orthopedist but we didn’t learn much there either. However, the x-rays didn’t show any signs of arthritis. I posted a question up on the Modified Adkins Diet for Seizures support Facebook group about whether or not joint pain was part of this diet. One person responded and she does have sore toes off and on. Her doctor thought maybe what she had going on was gout, but wasn’t sure. To try to lessen her joint pain she looked up foods to avoid or eat in moderation if you have gout. She encouraged me to do some of my own research. Everything I can eat and other suggestions to avoid is on the list I discovered with my research. I’ve been mixing it up a little more alternating chicken and beef. I don’t know that it makes a difference. However, I’d take sore toes over seizures any day!

I had one night this month that I woke with seizures. Thankfully it didn’t last long, but it did throw me for a loop. We’ve decided in the last 4 months, at least once or twice a month I do wake up in the night from seizures. For the most part, I sleep through any seizures I may having. I always check my ketones for the next couple days if I notice a seizure. When I’ve had seizures, my ketones have been a bit low. Over the past week I’ve decided that I need to up my fat so that I’m closer to a 1:1.3 ratio to stay in a higher ketosis.

I made chocolate chip fat bombs to get a quick boost of fat. This makes about 9 servings, but I eat 2/3 of a serving. There are 2 carbs in one fat bomb and 14 grams of fat.

¾ c. whipping cream

½ c. butter

¾ c. Bob’s Red Mill coconut flour

¼ c. Swerve

½ tsp. vanilla

¼ tsp. salt

¼ c. sugar free 85% dark chocolate chips

Store the fat bombs in the freezer

Also, to satisfy my candy cravings at Halloween I found sugar free Reese’s Peanut Butter Cups (1 carb each) on Amazon. So good!! This was my favorite candy previous to this diet (not sugar free of course). I also enjoy the Atkins chocolate coconut bars (2 carbs). They taste much like a Mounds candy bar. I also found sugar free Peppermint York Patties. I look forward to trying those sometime too.

We had a conference at church this month. Friday night was when I woke from seizures. In the past when I had a night like that, I would not feel like going somewhere early the next morning. This diet has changed my life so much because I was able to attend the conference early Saturday morning. I was a little tired, but I made it.

My weight loss has slowed down some but I continue to lose. I feel better just from the weight loss.

As some of you know last May I started a handmade card business. It has been slow, but over the past couple weeks I’ve had some good opportunities to get the cards out there. Larry Myers at River Ridge Hardware is now selling my cards at his store. Last week a florist from California whom I made a small order for a few months ago contacted me for more cards.

I’ve also been volunteering remotely for Focus on the Family and their Adventures in Odyssey (AIO) children’s radio drama for the past couple years. Volunteering for them has been a great opportunity! I work with a team of other volunteers across the country who are also remote. We market AIO through our social media accounts. I’ve been able to volunteer more closely (still remote) with the AIO marketing team. This month they beta tested their Club Membership app. I had the opportunity to help with collecting the data.

I took the membership class at church this past month too. This is a big deal for me because that would’ve been hard to do when I was having more seizures. The class was during the early church service and it was always hard for me to get up early. I’m still a huge fan of second service, but being able to attend that class was just one more step to a more “normal” life. I’ve continued to be able to keep up and participate in things, still confident I don’t have to worry about having a seizure. I have always needed a nap in the afternoons and now I can make it through most days without one if I have to. The dog on the other hand misses our snuggle time in the afternoon and loves her routine! Let’s be honest everyone loves a nap.

Every month I’m getting more of my life back. I am thankful to have time and feel well enough to enjoy all the new opportunities I’ve been given. Life is not perfect and this month especially had its challenges but it was so minor in comparison to the daily seizures I used to have.

Thank you for continuing on this journey with me. I look forward to writing my November and December updates as I learn how to enjoy this new diet over the holidays.

I have now been on the Modified Atkins Diet (MAD) for 3 months and it’s continued to go really well. I am not having seizures during the day. I am sleeping through the night, so if I am having any seizures we don’t know about them.

This Fall has gotten off to a great start. I have been able to be more involved at church. I started taking piano lessons again. I can confidently go places and not always be concerned or worried about having a seizure and leaving early. Overall, I feel better and much more in control of my life. I am also having less days thinking about how this diet could just stop working. It’s good to know that if your body responds to the diet initially, it should continue to work.  

I’ve already started looking for Thanksgiving recipes to substitute mashed potatoes and other dinner favorites. This weekend we just broke a record set in 1926, the last time snow accumulated in September. Even though I was looking for recipes, I promise I did not wish for snow this early!

Taken September 29, 2019

I found a MAD support group on Facebook. Many of the people in the group have children on the diet, but I have communicated with some adults on the diet as well. One person I was in contact with has been on the diet for 2+ years and as she said, “I got my life back!” I learned she likes to travel and because of seizures it was difficult to do that. After being on the diet she was able to travel out of the country and enjoy herself. The admin of the group recently contacted me as well and let me know that her son has been doing well on the diet for 10 years!

People have also shared recipes and some of their favorite food options. The group has been an encouragement to me.

All of my labs look good and today I was given the “OK” by the nutritionist to try increasing my carbs a bit. As long as I stay in ketosis and my seizures don’t get worse we can give it a try.

I have to add more veggies in my diet. Green beans are a staple and I also found Kirkland mixed veggies from Costco as another low carb option.

After looking at the nutrition label I realized I can eat a serving of Trader Joe’s party meatballs. I absolutely loved these for a snack or in spaghetti previous to this new diet. I have to skip the sauces now, but they still taste good. I’ve learned to appreciate the little things. Honestly, I have forgotten what a lot of my favorite foods taste like which makes it easier to stick with the diet. Occasionally I do crave a cookie or chocolate, but for the most part I don’t usually miss it. I pretty much recycle my food options throughout the week. Have hamburger a couple days, chicken another day, my homemade pizza option on a Friday night etc. It works for me.

This week has been 2 years since my medically induced coma hospitalization to calm my brain and get better seizure control. Often times when the seasons change, specifically in the Fall and Spring I get into more seizure trouble. My hope is that this year will be different and I will not get into any trouble.

Lately, I’ve had the thought about what my life might have been had we tried this diet sooner. It is what it is and I know that. However, it’s hard for me not to wonder. I also realize that had my seizures been under control or better controlled at the beginning I would not have had time to build some of the relationships I have today. I spent a lot of time with my Nana when she was still living. We had a very special relationship. Had my seizures been under control I wouldn’t have been able to spend so much time with her.

It was really hard to give up what I thought my life would be. Now that I’m doing better, I look forward to what this new life could be. I am not getting my hopes up, but I see a much brighter future for myself.

Thank you for continuing to follow my journey.

It’s been two months now since I started the Modified Atkins Diet. Everything has continued to go well. I have had a few seizures, but it has been about half as many as I was having before. They are small motor seizures and do not affect my thinking. I can still enjoy life and the seizures do not make me tired and confused. I’ve continued to get good sleep almost every night. As an extra bonus, I have lost 20 lbs. My neurologist has been very pleased with these results and how well my body has responded to the diet.

I’ve always been someone who finds a few favorite foods and just rotates them. I have been able to find a few meals that I like. My typical breakfast is eggs and sausage or bacon with tea and 2 Tbsp. of heavy whipping cream (for extra fat).

Unfortunately, I have always had trouble with lactose; however, for a lunch snack I’m able to get away with a Greek yogurt (3 carbs). Some options to go with that are almonds, pepperoni slices, summer sausage, raspberries, coconut clusters from Costco, or unsweetened shredded coconut, to name a few.

I found some 5 carb taco shells at the grocery store. (Mission brand, whole wheat, Carb Balance). I use these for bread and I often make tacos. It’s all about reading labels. I enjoy making a chicken wrap, or something with hamburger. We made a really yummy meatloaf the other night as well. Lettuce and other veggies have carbs in them so I have to pay attention and eat those in moderation as well.

I have eaten out three times while doing this diet, once for breakfast which is easy. The other two times I had a hamburger and a grilled chicken sandwich using lettuce leaves for the bun. So it can be done.

I use an app to help me look up foods without a nutrition label. I also have another app that helps me track my carbs, fat, protein, fiber and calories in my day. Modern technology is wonderful!

Every day I take a multi-vitamin, calcium and a fiber supplement. I have to pay close attention because fiber has carbs in it. I have to factor those in as part of my 15-20 a day (We only count net carbs). I also find fiber in raspberries, nuts and seeds, and the taco shells have quite a bit of fiber in them as well.

This month I had a birthday. We usually have dinner or go out to eat. Birthdays usually involve some kind of dessert. This year we decided to have a girls’ night and go to Mamma Mia at the Valley Summer Theatre. We had such a good time! That musical is so entertaining and the cast was awesome! Very well done!

I made a simple dessert of 1/2 cup frozen raspberries with whipped heavy cream (with 1 tsp of sucralose), and cinnamon and sucralose on a low carb taco shell. To go with it, I made a “root beer float” using diet A&W root beer and 3 Tbsp of heavy whipping cream. Surprisingly not all diet root beers are created equal, and A&W is my favorite for the root beer float option. This is becoming a staple to get enough fat in a day.

Getting enough fat in the day has helped me stay in the correct range of ketosis. I test about twice a week. I have had to limit my protein a little too. The nutritionist has been very helpful to figure out a good balance; I am so thankful to have her.

We decided to get together as a family and do homemade pizza as part of my birthday celebration as well. The pizza is no Papa Murphy’s or Pizza Hut but it is still satisfying and has a good taste. I make it with a low carb taco shell, Trader Joe’s marinara with 1 carb per Tbsp, 1 oz of grated cheese with less than 1 carb, 6 pepperoni slices, 1 oz cooked pork sausage, and 1 or 2 slices of crumbled bacon. I heat it in the microwave to melt the cheese. (I preheat the sausage to a safe temperature since I keep cooked sausage always available in the refrigerator.)

Another satisfying dessert is sugar free jello with homemade whipped cream and raspberries. Atkins brand also makes different bars and treats. I enjoy the chocolate coconut bars. They are similar to a Mounds candy bar. To be fair, I do miss my favorite M&M’s and Oreos. However, I choose to stick with this diet and have less seizures, which is way better than all of those sweets. I remind myself to be thankful for the foods I can eat, instead of missing the foods I can’t eat.

I am looking forward to this upcoming Fall. I’m excited to be able to be more involved at church and confident that I won’t have to leave early or fear having a seizure. Every day I have more confidence.

Thanks for following me on this journey and feel free contact me with questions or leave a comment below.

Katie

Faith is taking the next step even when you can’t see the whole staircase.

Martin Luther King, Jr.

Just before my senior year in high school, I was diagnosed with epilepsy. Over the past 16 years we have tried every seizure medication that is appropriate for me to try. I have had a few EEG’s and two surgery consults at Harborview. We learned from those that I am not a surgical candidate. This was very disappointing. We then tried a Vagus Nerve Stimulator (VNS) which is helping some, but I am still uncontrolled. I have 10-16 seizures a day. Sometimes for no apparent reason my daily seizures increase to 20-30 a day. This happens once or twice a year for 6-10 weeks.

Daily seizures changed my life. I had to give up many things. My college plans changed and I had to give up driving. I had always wanted to go to school and live on campus. Instead I lived at home and went to the community college. I learned to live with the cards I’d been dealt, but it wasn’t easy. It became hard to make plans because I might have a bad day and have to cancel. Eventually people moved on. I’ve always had supportive friends and family. I hoped and prayed that we would find something to help me be seizure free or, if anything, have less frequent seizures.

Two years ago, I had a big flare up and ended up in the hospital in a medically induced coma to try to calm my brain. After that I spent about 6 months as an outpatient at St. Luke’s Rehabilitation working with therapists to recover from the coma. My brain did calm down but I still continued to have daily seizures (my doctor did not anticipate the seizures going away altogether and we knew this going in). We had tried everything to calm my brain, but after several weeks a medically induced coma, unfortunately, was our best option. I did better for the next year or so.

In April 2019 I had another flare up. We adjusted my meds a bit, but it was still a huge struggle. For the past year or more I have not slept through the night without being awakened by seizures. I had a fatigue work up and discovered that I have mild sleep apnea. I now wear a CPAP when I sleep. Now that I am sleeping more deeply, when I would wake from seizures I would be more confused and frantic. Every day was a new day. I could never figure out why I was hurting or what was happening. We decided this is because I was further into my seizure and too confused to realize what was going on. I have focal impaired awareness seizures. I do not lose consciousness and only my left side is affected.

After much communication with my neurologist and PA, they suggested two other options. One was to try another medication or the ketogenic diet. I chose to start with the diet, as I was not thrilled about the potential side effects of the medication option.

Neurology sent me to a nutritionist to begin the process of starting the diet. It took some time to get in with someone, but  it has been worth it. I began by meeting with the nutritionist and she gave me some good information and resources about the ketogenic diet and epilepsy. She also went over some good nutritional scales, side effects of the diet and other information. We decided I should try the Modified Atkins Diet (MAD). This is much like the Ketogenic Diet, however, it includes less fat, no limit on protein and 15-20 carbs a day as opposed to 10-15 carbs a day. The MAD is more tolerated in adults.

Before beginning the diet, I took a week or so to gather what I needed. I started some meal plans and looked up foods and recipes I could eat on the diet. I’ve always been a picky eater, but I was determined to give this diet a try. I read the book, Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders. I did a lot of Googling and found some good information on epilepsy.com as well as a webinar on the diets.

At the beginning of July, I began the MAD. The first day was hard because overnight I changed my eating habits. I started with simple eggs, sausage and tea with heavy whipping cream (extra fat)  for breakfast. We went shopping several times and read labels to find the low carb foods. It’s amazing how many carbs we eat a day. I continued to look up recipes on Pinterest.

During the first week, I didn’t feel very well. I had been warned that I may feel bad. I got to the point where I really wasn’t hungry or the smallest bit of food was satisfying. I drank lots of water and within 24 hours of the diet I began losing weight. By day 2 I was officially in ketosis. We slowly started seeing more positive effects when it came to my seizures. I began sleeping through the night and in the first week we noticed that I was having about half as many seizures a day as I was having before beginning the diet. By week two I was having some days in which I didn’t have a seizure at all. At times I noticed my VNS was firing more frequently, but there was no sign of an actual seizure. My VNS must be helping more than we realized.

One morning I woke up feeling terrible like I’d had a lot of seizures. I was sweaty and felt sick. I looked back in my notes and realized I had not eaten very balanced the day before. When I tested my ketones the strip was lighter. I was still in ketosis, but not as much as I had been previous to this bad morning. I reached out to the nutritionist and she advised me to lower my carb intake to about 10-15g, lower my protein to 50g, and eat only 800 calories for the next three days. That should get me back into a higher level of ketosis faster. Sure enough, it worked and I stopped having trouble. I was back to my new baseline.

I was thankful that I did have a bad day, because I learned about what to adjust and what my body needed to stay in the “right” level of ketosis. After the first week I started testing my ketones once a day and now by month 2 I am testing twice a week.

This has been incredible! I can’t believe that after all these years we finally found a therapy that is working for me. Our prayers have been answered. I am so thankful that the epilepsy doctors are revisiting dietary therapies as a treatment.

It has officially been a month and I have gone 14 days without a seizure. I know that is not very many but the MAD is working. I am excited and nervous about what this new normal might mean for my life. I feel as though I have been given a second chance to make a better life for myself. The possibilities seem endless. I am not focused on just trying to survive a day and hope I wouldn’t have too many seizures. I’ve noticed that my thought processing is better and, overall I feel better. I don’t feel like I’m trying to shake the cobwebs from my head all the time. Losing weight has been an extra bonus.

I have decided to blog my personal journey and will be posting about how things are going about once a month. My hope is that these blog posts will be encouraging to those with epilepsy and their loved ones. Please do not begin this diet on your own as a therapy, but rather talk to your doctor and get the help of a nutritionist.

Katie

Ketogenic and Modified Atkins Diets: Treatments for Epilepsy and Other Disorders (6th Edition) by Eric H. Kossoff, MD et al

https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies