Nora was born in 2008. She had normal or faster than average development in all ways. She has always been a particularly active and opinionated child since the moment that she was born.
November 2010: First seizure
In November of 2010, the day before Thanksgiving, Nora had her first tonic-clonic seizure. She was almost 2 and a half years old. It lasted about 1 minute. We called 911 and the EMTs arrived in about 2 minutes. She was standing next to me when it began, she collapsed into my lap, convulsed for about 1 minute while turning blue, then went limp, resumed breathing and slowly came to. Afterward she was completely exhausted, which is entirely normal, so she slept on and off through the medical checks. The EMTs transported us to the emergency room, where Nora underwent all of the typical tests for major seizure causes. Her CAT scan was normal, spinal tap normal, no fever (they took her temperature at least 3 times. The EMTs at one point said that they thought their thermometer wasn’t working, they were so anxious to find a fever to explain the seizure). After a night in the hospital, we went home with no explanation. Everyone hoped that this was an isolated incident, although we were considering seeing a neurologist.
December 2010: More seizures, treated with Keppra
Before we could see a neurologist, Nora had another tonic-clonic about 3 weeks later while at daycare. The ambulance was called again and Ted met Nora in the ER. She had another seizure while in the ER, and they pumped her full of Levetiracetam (brand name Keppra), an anti-seizure medication. This time they did an MRI, which was also normal. We went home with a prescription for Keppra, while Nora was dizzy and disoriented from the initial high dose.
After 3 unexplained seizures in 3 weeks, Nora got an appointment with Dr. Thomas Koch at Doernbecher Children’s Hospital at OHSU in Portland, OR, at the end of December 2010. She was considered an urgent case, so we were able to get an appointment within a few weeks. Nora’s EEG was normal and Dr. Koch told us that Keppra was his first choice for seizure medication because of the lower incidence of side effects and because it does not affect development. With a normal CAT scan, MRI, and EEG, we were told that Nora just seemed to have a lower seizure threshold than most people, and that anti-seizure medication would give her the best chance of outgrowing her tendency to have seizures.
Nora hooked up for an EEG
July 2011: After 6-months seizure-free, weaning from Keppra
For 6 months, Nora took Keppra twice per day and she was seizure-free. She had some side effects, such as aggression and hair loss, but we started to feel confident that the Keppra was preventing seizures. In July 2011, we got approval from Dr. Koch to wean Nora off Keppra. She was 3 years old. We were told that 50% of kids will grow out of their seizure disorder in 6 months, so we decided that it would be better to be done with Keppra sooner rather than later. If she had another seizure, we would go back to Keppra.
August 2011: Seizures return, myoclonics begin
Just a few days after completely stopping Keppra, Nora had another tonic-clonic seizure. It happened during the early morning hours. Nora was not sleeping well that night, so I had been in and out of her room several times. I was tucking her in again and the seizure began while she was in bed. We called the neurologist’s office in the morning and started Keppra again right away.
Nine days later, she had another tonic-clonic while we were at the swimming pool in the afternoon. She recovered, the EMTs were called to check her out, and I was able to take her home with me as soon as I was able to put her in the car. During this time, we were building back up to a full dose of Keppra.
Five days later, she had another tonic-clonic while we were visiting the Oregon coast. It started in the car, so we stopped and took care of her, then drove right home (only about 1 hour). She slept almost the whole way home, and was disappointed to find that we were in our driveway when she woke up because we were planning to stop for ice cream. She was in a great mood for the rest of the evening, but had another tonic-clonic at approximately 9 pm. Again she slept and recovered. We had her in our bed to keep an eye on her. Then she had yet another tonic-clonic that started in her sleep, around 1 am.
Three tonic-clonics in one day was devastating. And the next day, the myoclonics began.
A myoclonic seizure is a short involuntary bodily jerk. They are considered a type of generalized seizure because the whole brain is involved, but for Nora the jerk was contained to her upper body. Some could be so strong that it would throw her off-balance, and often she would have one while eating so food or cups would go flying. But immediately after a myoclonic, she was usually perfectly normal. She did not seem to be aware that she had a seizure, only that something fell or spilled. Sometimes there would be a longer postitcal period, where she was disoriented or irritable.
At first we didn’t know what we were seeing. It seemed like a relief at first, like she was starting to have a full tonic-clonic but it was somehow aborted. Maybe the Keppra was starting to work. But we soon realized that there was something else going on.
Just a note about myoclonic epilepsy: It’s scary. If you Google “myoclonic seizures,” you will see all kinds of heartbreaking disorders, and they are notoriously difficult to control. The worst-case scenarios are degenerative genetic disorders that have no treatment. The best-case scenarios are still difficult to treat and disruptive to a child’s life and learning. Although Nora did not have other symptoms of the degenerative disorders, it was terrifying to think that we were on our way down that path.
We did not keep great records when the myoclonics started because we didn’t realize what was happening. On the third day after they started, I wrote down the times that I saw them–10 confirmed or suspected myoclonic seizures, scattered throughout the day. Our records show that we were counting under 10 every day for a few weeks, then they started to climb a bit. All this time she was taking Keppra, which didn’t seem to be helping. The neurologist had us increase the dose for about 3 weeks, and the myoclonics only increased. For 1 week we tried a lower dose of Keppra because we heard from a neurologist friend (yay for Dr. Amanda Diamond!) that Keppra can aggravate myoclonics for some individuals, even though it was approved as a treatment for myoclonic epilepsy.
It was a frustrating time. The neurologists couldn’t tell us much of anything about a diagnosis or prognosis. That’s the crazy thing about epilepsy: we can’t see inside the brain, and we just have to wait and see how it develops. At one point Dr. Koch said in passing, “it seems like she has juvenile myoclonic epilepsy, but that doesn’t usually happen until around 8 years old.” That was Nora, always doing everything early, developing an epilepsy for 8 year olds when she was only 3.
After persisting with Keppra for about a month, we switched to valporic acid (brand name Depokote) which is considered the best choice for myoclonic epilepsy. Because we could only wait and see, typically treatment is to experiment with various drugs to see if anything else works. We felt like we could throw a drug at it and wait awhile, then if it didn’t seem to be working, they would say: “Increase the dose. Still not working? Increase the dose. Still not working? Decrease the dose? Still not working? Different medication…” Our record keeping began in earnest to figure out what was going on with Nora.
October 2011: Weaning from Keppra, beginning Depokote
Because we were suspicious of Keppra, we wanted get her off Keppra as soon as possible. We were also in favor of only using 1 drug at a time. It took about 2 more weeks to completely wean her off of Keppra and build up to the full dose of Depokote, and by the end of those 2 weeks we had amazing results. She was having 7-13 myoclonics per day in early October 2011. Then, the drop:
- 10/11: 13 seizures
- 10/12: 7 seizures
- 10/13: 4 seizures
- 10/14: 2 seizures
- 10/15: 1 seizure
- 10/16: 0
Then she hovered around 1-2 myoclonics per day for about a week, only on a moderate dose of Depokote. We didn’t know it at the time, but these drugs can have a “honeymoon” effect: they start working right away, then the brain gets used to it and it wears off. We tried a higher dose, but still her seizures kept increasing, leveling, and increasing.
During that time, we also started reading about diet approaches and started toying with a low glycemic index (LGI) approach to keep her blood sugar stable. We were not counting carbs, just cutting out sugar and feeding her regularly. Although we didn’t know if we were getting results from the diet, Nora’s mood seemed better overall.
November 2011: Myoclonic seizures increase again
Nora gradually started having more and more seizures again. We talked to Dr. Koch in mid-November 2011. He wanted Nora to undergo comprehensive testing to get more data to determine an underlying cause. But before we were able to make that appointment, her myoclonics shot up suddenly at the end of November 2011, from about 5 per day to 20 per day over a 4-day period, prompting him to get her in for the testing on an emergency basis before it sped out of control. The 2-day testing period included:
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Nora during her 24 hour EEG
24 to 48 hours of video EEG for a longer background EEG, and catching myoclonics to see if they could get more detailed information about where they were coming from.
- Genetic testing to see if there are any genetic abnormalities, such as gene deletions or other mutations. Some of the really bad progressive myoclonic disorders have a genetic basis, so we could rule out some of those. A deleted gene which was also responsible for some hormone functions was also associated with myoclonics, so they could get some clues into other bodily processes that could manifest as myoclonic seizures and treat it accordingly.
- Metabolic function tests (urine and blood samples). Calcium, potassium and magnesium are important for brain function.
- Meetings with their new epileptologist from Seattle, Dr. Carter Wray, who specializes in the ketogenic diet and a meeting with their dietician. Dr. Koch highly praised the new doctor and said that he has already done some great things for their patients with more difficult epilepsies.
Ted’s graph of seizures and therapies
Nora was such a good sport for all of the tests, hooked up to the EEG machine for a full day and having people check her out. Doctors with a gaggle of residents would come in periodically to meet us because we were known as the people with the great data. We had been keeping track of every seizure by type and time of day, dosages of medicines, and other factors that could have influenced seizure activity. Ted created graphs to show the doctors to share everything we knew. It was a great lesson in any medical mystery case—keep good data!
Nora’s background EEG looked good and she did not have any genetic abnormalities or other metabolic issues. The testing included metabolic tests that would show any reason that she should not do the ketogenic diet for epilepsy. She was all clear on all of the tests, and we had our first meeting with Dr. Wray, who would become her keto-diet doctor. His opinion was that Nora has a benign myoclonic epilepsy. About 1/3 of his patients with myoclonic seizures do not respond to the first-line drugs (Keppra or Depokote), and about 1/2 of those will respond to the ketogenic diet. He felt that not knowing the cause was actually a good thing, because they understand the mechanism for the very bad conditions, but many people live with benign myoclonic seizures. It’s a matter of managing them and quality of life.
We talked about doing the traditional ketogenic diet induction phase, where we stay in the hospital and she begins with a fast, then moves immediately to a 4:1 ratio (fats to carbohydrates + protein). Dr. Wray felt that the induction phase was not absolutely necessary for the success of the diet, which has been corroborated by studies. We agreed to try the Modified Atkins Diet (MAD) first, and if Nora improved and we felt it was necessary, we would move to the traditional ketogenic diet.
December 2011: Beginning diet therapy
For her first month on MAD, we had some seizure-free days and some days with seizures. Nora’s mood and energy improved and her tastes shifted to expect a low-carb diet; she stopped asking for sweet foods. She was eating 10 grams of carbs per week, but we couldn’t get the full amount of protein into her—they recommended 50 g per day, but we could only get her to eat 30-40 grams most days. She had no problem eating 130 grams of fat per day because she enjoyed hot cocoa made out of cream and cocoa powder, so she was closer to a 3:1 ratio on most days, but we were not calculating every meal for the ratio, only making sure that she was getting the necessary amounts each day. With her dietician, we agreed to stay with a breakdown of 10 g carbs, 32 g protein, 125 g fat, close to a 3:1 ratio, and we could keep doing it our way. Normally the dieticians would have a lot of control over particular meal plans, but I wanted flexibility and the dietician trusted that we could handle diet administration on our own, given our success so far.
Gram scale and log book
I was administering the diet by looking up nutrition information online for each food and estimating portion sizes, writing down a running log of everything she ate in a small journal. We made a spreadsheet of common foods and just mixed and matched them until we got a reasonable meal. Next we bought a kitchen scale that measured to the gram and had a built-in database, so we could enter the code for a food and weigh it, then the scale would tell us the nutrition breakdown. Eventually we started memorizing common foods. Nora didn’t complain much about her food, but on the ketogenic diet the child must eat everything that has been prepared, so we spent many long evenings hand feeding and sweet-talking her into eating her whole meal. Meals got easier over time. It took a lot of time and dedication to administer the diet, but it was better than counting seizures.
Dr. Wray was very pleased when he saw Nora in January 2012 after 1 month of MAD. Although she was still having seizures, they were under better control, mostly myoclonics coming as she went to sleep and after waking up. We learned that constipation is connected to seizures, which is a really important note for the diet because the diet is very constipating! We started to regularly give Nora a mild laxative and be sure that her diet has plenty of fiber and fluids. Given her higher fat intake, Dr. Wray decided to treat her like a kid on a keto diet and follow her more closely with regular testing, rather than the lighter testing they do with kids on the MAD diet. We would follow up with blood tests and office visits every 6 months.
February 2012: Myoclonic seizures reduced, tonic-clonic seizures return
Then at the end of February 2012, Nora had another tonic-clonic during the night. She had not been sleeping well and after getting up several times, I stayed in her bed. It started after she woke at 3 am and was typical, lasted 1 minute and she slept afterward. We had not been doing the urine ketosis tests regularly, but after the seizure her ketone levels were lower than normal in the mornings. She also had more myoclonics in the following two weeks, and at took some time to get her ketone levels increased again to the highest levels in the morning and the seizures decreased again. We added coconut oil to her diet throughout the day and loaded up on higher levels of fat before bedtime to try to keep ketosis through the night. We also started a prescription for carnitine, a protein that helps to process long-chain fatty acids. She was still taking Depokote at that time. But remained unsure about the reason for the breakthrough seizure. That is common in the early days of seizure control, but we would strive to understand what is going on so that we don’t make mistakes again in the future.
April 2012: Last tonic-clonic seizure
On April 5, Nora again had a tonic-clonic, at 6 am in the morning. It was more mild than past seizures and did not result in more myoclonics during the following days. She would still have myoclonics when falling asleep, but that is the most vulnerable time for the brain between waking and sleeping (we all have myoclonics when we fall asleep, twitching and jerking awake with a big one—but although it is normal, Nora’s myoclonics falling asleep were much larger with a loud vocalization and often there were several).
Then on April 24, Nora had her last tonic-clonic seizure at 5 am. Again, it was typical and it was not followed by daytime myoclonics. Of course, we did not know at the time that it would be the last. This time we talked with Dr. Wray and her dietician, Karrie. Dr. Wray suggested switching from Depokote to another medication, which was not the route that Ted and I wanted to take. We were planning to wean her from Depokote and go diet-only when her tonic-clonics showed up again. With our dietician, we worked on a new diet plan for the next step, which Dr. Wray approved. We moved up to a 3.5:1 ratio, increasing fat a bit. We also committed to keeping her ratio much more consistent throughout the day so that each meal and snack met the ratio and making sure that she was eating at regular intervals to keep her ketosis level steady.
After that change, Nora did not have another tonic-clonic and a bit at a time the strong myoclonics at bedtime also went away. As of April 24, we considered Nora seizure-free. We still kept a written log of every bit of food that Nora ate, but created a spreadsheet to help us build meals more quickly and easily. Diet administration became a routine part of life and Nora’s acceptance of her diet is the main reason for its success. Part of her acceptance was the ability to make the kinds of foods that she liked. We tried to keep her excited about her food, trying new “cookies” and other treats. We bought the Keto Cookbook, which was great fun for her. She looked at the pictures and told me what she wanted, and I would make sure that she had it.
July 2012 to April 2014: Seizure-freedom with diet therapy
We cruised along at a 3.5:1 ratio, working around high blood acid levels with Cytra-K and baking soda and doing bloodwork and doctor’s visits at 6-month intervals. We started decreasing her Depokote levels in May and Nora did fine. She turned 4 in June 2012, and she was weaned off Depokote in July. Now it was all diet therapy! We managed diet side effects like high blood acid levels. We made it through candy-laden holidays like Halloween and Easter, and treat-laden holidays like Christmas (we still eat the Snickerdoodles!) and birthdays. Nora started school in 2013 and brought her lunch, snacks, and special treats to school. She was amazing in sticking to her diet as she grew up and gained more independence. We learned many lessons and shared them to support others.
April 2014:
In April 2014, Nora was 2-years seizure-free and we started to wean her off the diet. The rule of thumb in pediatric neurology is to get 2-years seizure free, any way that works, drugs or diet. If you can do that, there is a 60% chance that the child can come off treatment and never have another seizure again. There is some indication that idiopathic childhood epilepsy (unknown origin) like Nora’s has a better chance because it may be due to some sensitive window in brain development. If her brain can grow and develop past the window without seizures, it is likely that she is past the problem.
Because Nora was still reasonably satisfied with her diet and we wanted to give her the best chance at seizure-freedom, we took a slow wean approach. There is no general consensus for how to wean off the diet, so we worked out a plan with Dr. Wray. We went down on her ratio by 0.25 every 4 weeks, first increasing to the protein to the normal level for kids her age, then increasing the carbs as the ratio came down. Between April and September, she moved from a 3.5:1 ratio to a 2:1 ratio, and from 10 g of carbs per day to 35 g of carbs per day (just note, most people eat 120 g carbs per day!) By December 2014, she was at a 1:1 ratio with 54 g carbs, and we could move to Modified Atkins Diet again, just estimating portion sizes instead of weighing everything.
The first step we took into MAD was calculating and weighing only the carbs that Nora eats, but giving her any protein and fat that she wants. Although we were still using the gram scale, we spend a lot less time working out each of Nora’s meals and she is happy to eat cheese or nuts when she wants to. Eventually we moved to estimating all of her foods, even the carbs. But after calculating and weighing to the gram for so long, we realized that we really don’t know portion sizes! We used this time as a chance to re-learn portion sizes so that we could eyeball meals that will be a good balance for Nora.
We also looked through the normal foods and categorized them by ratio (Foods by Ratio) so that it is easier to teach her about how to choose low-carb foods and how to pair carbs with protein and fat. That helps to keep her at a 1:1 ratio even if we weren’t weighing her food for each meal or snack.
June 2017
Now that Nora is over 5-years seizure-free and 3-years since formally weaning off the ketogenic diet, we still encourage a MAD or low glycemic index (LGI) style diet. The only candy Nora eats is high quality dark chocolate. We don’t buy cookies, cupcakes, or regular ice cream as treats. We still make cookies and cakes out of nut-flours and go easy on the sweetener, and she still enjoys her MAD About Granola for breakfast with half and half. She still eats Mission Carb-Balance tortillas for roll-ups or quesadillas, although she eats a regular quesadilla from our favorite neighborhood Mexican restaurant because they are so generous with the cheese! Low-carb eating is a way of life in our household, especially for Nora. Because we will never know the reasons for her epilepsy, we cannot be sure about her future. We’ve heard that puberty can be another sensitive period of brain development, so we are keeping our healthy eating habits as long as we can, just in case we need to go back. But without the diet, we don’t know where Nora would be now. With the diet, she is a strong, smart girl, full of life and love.
I just came across your website. I haven’t had the chance to read all of Nora’s story, but did just want to ask if she’d been tested for a mutation of PCDH19. There is a lot of overlap in the history of kids with SCN1A mutations and PCDH19. PCDH19 tends to only affect females.
My daughter has Dravet syndrome with a mutation of SCN1A and is on the modified Atkins diet (spent 3 years on full keto). I am on the board of Dravet.org. You probably already know that Dravet syndrome is a clinical diagnosis that is only confirmed by genetic testing. Up to 20% of kids with Dravet will test negative for a mutation. However, I see that Nora was about 2 when she first had a seizure, which is quite late for Dravet.
I wish you all the best in your quest for a diagnosis and treatment for Nora.
Sincerely,
Angela Black
I wish you
Thank you, Angela. We will look into the PCDH19 gene and ask Nora’s doctor. I don’t recall that it was mentioned, but it was certainly not on the top of a list. He was very interested in the range of outcomes for people with the SCN1A mutation, with Nora on the very mild end if she had it. He seemed skeptical about doing any more genetic testing (he was very focused on SCN1A), but we will bring it up at our next appointments.
I am glad that your daughter was able to move to a less restrictive diet. Thank you for your kind words and work.
We had a genetic test done for that gene and it came back negative with our first neurologist and I switched neurologist, he had a spinal tap done which we found she has Glut1. My new neurologist said that some doctors think that this should show up in the gene testing and that’s not always the case! We have to do the keto diet because of her low levels of glucose. He’s positive she’s going to break through her seizures (she’s 5, been diagnosed since she was 2).
Hi Melody, I’m glad that you got a diagnosis. Glut1 is tough, we know another family who is doing long term keto because of Glut1 and their son still have breakthrough seizures too. Thinking of you and your daughter, and wishing you the best.
I agree with Angela. Dr. Koch is a great doctor, and it’s smart of him to have tested Nora for SCN1a first, since that’s the most common identifiable cause of seizures like hers. But probably the case that there is an answer buried in the DNA blueprint somewhere, and it’s just a matter of whether or not it can be uncovered.
PCDH19 is a possibility, as is SCN2a, SCN1b, GABRG2, GABRD, and (more recently) SCN8a.
Oh, and one more detail: make sure the SCN1a testing included both sequencing and deletion testing.
I just found your blog this morning (and between breakfast preps., taking kids to school and the myriad of other tasks I have been reading Nora’s story…I love her name, btw!) My son, Sam (who is 10) is 10 weeks seizure free today. I am almost afraid to write it. He is newly diagnosed with a primary generalized seizure disorder and our neurologist suggested that we wait on meds and try the Modified Adkins verson of the Ketogenic diet as a 1st line of treatment (which is very rare I understand.) The diet has its challenges but seems to be working well for Sam. Thank you for sharing your experiences. It helps me so very much to read other families experiences and know that we aren’t alone. Have a great weekend!
I’m glad to hear that Sam seems to be responding well to the diet. It’s amazing, isn’t it? As you read, we also started on MAD and moved to a stricter keto diet because she seemed to be doing better. I hope Sam continues to do well on the MAD diet. And I know what you mean about not wanting to say “seizure free”–we have gotten superstitious about too (knock on wood, throw salt, etc.)
I hate to say it, but there will be set backs. And sometimes you don’t know why. It’s frustrating, but trust that if the diet works, it works. It’s great that your neurologist suggested it right away. I’m happy that we only went though 2 drugs; there are stories of families that go through 10. How horrible.
Keep at it! Check out all of our recipes! It really helps to have something that is bread-like, even for the texture. I will keep posting recipes as I make them.
Christy,
I have admired you and your husband, Ted for over a year now. You both remind me so much of my own partnership with my husband, Jeremy. I am an oncology nurse at Emory University in Atlanta, GA and he is a Senior Manufacturing Controls Engineer at OPTIMedical. He is an amazing dad to our boys also, like Ted, has developed a program for us to use while Charlie Luke is on the keto diet.
I do not know why it has taken me so long to write you and thank you from deep within my soul for all that you have blogged, especially your recipes and just your day to day experiences in such detail.
My son, Charlie Luke, was dx’d with epilepsy the day before his 2nd birthday, March 5th 2013. We still do not have an official diagnosis but his neuro/epileptologist- Dr. Flamini is leaning towards Doose Syndrome which the keto diet has “cured” the majority of the cases if implemented versus antiepileptic drugs therapy.
Charlie Luke started out having very mild head drops to full blown drop attacks that came on in a fury! It has been such an incredibly scary time in all of our lives. When I witnessed his arms flailing up in combination with the head drop, I instinctively knew that my first born had epilepsy. Sad, but very true. I researched for days and went into the neuro’s office screaming keto diet, lol. With much coaxing, we tried and failed 3 drugs and now, after 9 months of grueling tweaking of the diet- my Charlie Luke has been (I am afraid to say it too) has been seizure free for over 5 months!!! Once he was weaned off all meds, Keppra, Klonopin and Onfi, he has now started to develop at a nice constant pace. He has been significantly delayed since the seizures began. Was Nora?
I just wanted to thank you and appreciate you for all that you do. You are SUCH a good mama, my friend and my inspiration. There will be many jewels on your crown, xoxo
E’dy Burel Choate
Thank you for your kind words, E’dy. And good job to you! Congratulations on 5 months seizure free! I know how you feel–holding your breath and don’t want to jinx it! Hearing other parents’ stories is an inspiration to me and I was so thankful for other parent blogs that we wanted to keep spreading the word too. I’m so thankful to have been able to reach out to others and help other kids and parents.
Nora didn’t seem to be significantly delayed, but we also didn’t spend too much time with her on drugs and she was not in preschool at the time so we weren’t really measuring development against other kids or academic learning. We were just so focused on the seizures and not seeing any regression, and thankfully she didn’t seem to regress at all. If she had been having lots of myoclonics in an academic setting I’m sure she would have had difficulty progressing, which is what I’ve heard from other parents of kids with myoclonics. She doesn’t have Doose though because she never had drops, so no one really knew what to expect, only waiting and watching. We have thrilled that she is on track or beyond now, reading above her grade level and loving 1st grade.
You and your husband have saved your little Charlie Luke too and have so much to be proud of. Thank you for writing and spreading your inspiration too! It’s possible to beat epilepsy!
Christy
Hello Christy,
Wow… I was just directed to your blog by a Modified Atkins yahoo forum… and I can’t believe it, reading Nora’s story is like looking into a mirror! I have never met or heard of anyone who is experiencing what we are…
We have 6 year old identical twin girls. Both our girls have been diagnosed with JME… our girls haven’t had TC seizures but started with Myclonic Jerks at the age of 18 months and it took another 18 months for a diagnosis. Unfortunately, like you said most kids with JME start their seizures at about 8 years of age, so to see toddlers with this diagnosis is rare. Only one of our girls has had a tonic seizure to date. In fact, we got to see a professor last year and she explained that the girls were so rare that there is no ‘syndrome’ associated with their diagnosis. My girls are extremely photosensitive and often ‘self induce’ a seizure. All the tests have come back normal, the only thing left to do is gene sequencing which should be done in the next 12 months or so. This is being done through a research team here in Australia, who are looking into our families as their is a strong history of migraine and another case of epilepsy in the family (which is not uncommon with JME).
We have been on the medication roundabout, without success, in fact they went from 6 seizures per day to 130 per day. We started MAD in October 2011 and have success in the range of 80-90% and as you said it can be a bit hit and miss with MAD.
I am so glad I have found your blog and would love to chat more.
I look forward to reading through your past posts.
Krischelle
Hi Krischelle,
I would really like to talk with you more about the diagnosis issue too. If you think MAD is helping, they say that moving to a higher ratio is like increasing the dose and you might get better seizure control. That was our approach, but it seems that doctors in different parts of the world are giving different advice. I would think about it if I were you though. There are so many ways to make this diet palatable now.
Keep us updated and be in touch. We will see Nora’s doctor again on Friday for her 3 month check up, so hopefully it’s all good news still but I want to push him more on the diagnosis and possibly doing more genetic tests.
Christy
P.S., Sorry for the late response. I was away from home for a few days for a meeting and fell behind!
I stumbled upon your website today, looking for recipes for the MAD diet. We placed our son on the diet three months ago, and I am trying to convince my husband to do the full blown keto diet. We are down to 2-4 seizures a day, compared to 40-75 a day. Down from four medications to one. Our family also went completely organic, natural with our foods, which seemed to help the MAD diet outcomes even greater.
Thanks for your website. It is inspirational.
Congratulations Danielle! We definitely found that increasing the diet ratio helped Nora. Now she is at 3.5:1 and 7 months seizure free, and drug free! Even small increases in the ratio could help, until you find the level that he needs. And the keto diet sounds very difficult and daunting when you start out. It helped me tremendously when I found other parents that are making it work–not only for seizure freedom, but fitting it into the daily routine and having a happy, healthy eating kid. Look at our recipes, go to http://www.ketocook.com (and see their cookbook, if you haven’t yet). It helps to have full information about what is possible when deciding whether to go with a stricter diet. From our experience, it’s been a wonderful therapy for Nora and very doable.
As I type, I’m finishing some baking for Nora–fiber rolls (recipe on the blog) and snickerdoodles (from http://www.ketocook.com)!
Greetings from down under – Australia! My son aged 10 sounds like he has had a similar story to Nora – started with TCs and developed Myoclonics at around 4 yo. The TCs are controlled by meds but the myoclonics are just increasing both in number and severity as he is getting bigger. We are about to start the MAD diet in Feb, so I am very excited to have found your site! Thankyou so much for all your hard work on this site – I will be following your progress with Nora with much interest! As I saw on a previous post, you are an inspiration!
Rebecca
Good luck Rebecca, I sure hope it helps. Remember that it’s really hard to get started, for both you and your son, but if you see it through it can be a life changer. I’m happy to answer questions and provide support.
There is another family from Australia that we have been in touch with, twin girls with a similar story. We could try to put you all in touch with each other (privately, off-blog). Our doctors are trying to work with their doctors to see if there is some genetic similarity underlying this, because Nora has been quite a mystery to all of the smart doctors here. It’s good to not feel so alone.
I’m so happy I found this website with some wonderful ketogenic recipes!
My daughter is 3, diagnosed with Myoclonic Epilepsy when she was a little over 2. We’ve been battling it now for 18 months and turning to the Ketogenic diet since medications aren’t working.
She has also been re-diagnosed as Myoclonic-Astatic Epilepsy, a developmental degenerative form of epilepsy if we can’t get the seizures controlled, which can be difficult with this form of epilepsy.
She went from having myoclonic jerks and absance seizures, to having drop seizures and clonics (we haven’t had a full tonic-clonic)
She is very sensitive to medications. She’s highly allergic to Depakote (broke out in hives at a 1/3 of the dose), she’s currently on Keppra, but any higher than 5ml twice a day and her personality becomes volatile, aggressive, violent and depressive even with 50mg of B6. We tried Zonegran for a month and within 3 weeks at a 1/3 of the full dose, she began showing signs of high anxiety. At 4 weeks, her dosage was increased from 1ml to 1.5ml twice a day and she began to have full blown panic attacks to where you couldn’t even move 2 feet away without her either hyperventilating or breaking down in a panic.
So within the next month or two, we’ll start the Keto diet.
How do you handle Halloween on the Keto diet? Does she just not go?
Hi Rachel. Sorry to hear about your experience, that’s a terrible run. I hope the diet works so much better for your girl, it’s been amazing for Nora.
We have a blog post about Halloween: http://blogs.oregonstate.edu/modifiedketogenicdietforepilepsy/2012/11/04/halloween-treats/
Nora has been amazing throughout all of this. She has made the diet a part of her identity. That doesn’t mean that it is not hard for her sometimes, but she completely understands that she has diet limitations and uses it as part of what makes her special. We also talk about how lots of people, almost everyone, has some diet issue–gluten-free, I can’t eat eggs, allergies, etc. Compliance is really the key to making the diet manageable. It will be hard at first, but a good attitude by everyone is really important.
Keep us updated on your progress and good luck.
Hi Christy, I’ve been reading your site for a while now because your story sounds like ours. My son 2.5 at the time had a tonic clonic on Dec 26, 2012. We were sent home, saying it was a fluke. Then three weeks later the myoclonics started. He is now 38 months old, so we’ve been at this for a little over 7 months. We started on Keppra which didn’t really seem to do much – maybe keep the TCs away – but we will never know. His myos kept coming everyday at a fluctuating rate – 10 on a bay day and 1 on a good day. It was really random. We started Depakote and started to see the honeymoon thing go on – 4-5 days of zero, then they crept back up. We have never gotten into the double digits (unless we’ve missed a bunch but this is pretty consistent even on the days when we are with him all day). We weaned Keppra and are still on a pretty high level of Depakote with the L Carnitine. He tolerates is fine and is developmentally right on track, which is great – but we do not have that seizure freedom. For example, today he had 1 at breakfast – and the three days prioir all zeros.
Docs want us to add Zonegran, and we are holding off and instead attending a Keto Clinic this month at Children’s Hospital in Philadelphia to learn about MAD. We think that might be a good starting point for us. We are also waiting for some genetic tests to come back. There isn’t an obvious reason for his E. I love your recipes. We only have one son, and I love to cook, so I am not too worried about managing that part, I am more worried that he’ll refuse it and that someone at daycare will give him a cupcake (even if we tell them not to). I just wanted to reach out to say hello and your daughter is a doll, congrats on all of the hard work.
Hi Lara,
Our stories do sound very similar. Our doctor keep saying that myoclonics paired with normal development is so very rare. He is willing to do some genetic studies if he can find enough kids with similar stories and coordinate with the other doctors. I know that CHOP has a great keto program and great support. I emailed with one of the nurses there who wrote a paper on their parent support system.
I think you are doing the right thing. Once a kid has failed 2 drugs, it’s statistically more likely that the diet will work rather than another medication. They suggested Zonegran for Nora too and I’m so thankful that we started with the diet first, because we saw the results very quickly and didn’t have to suffer through another wean on-wean off period of something that didn’t work.
Compliance is really on the minds of everyone who does the diet, because it’s the most likely reason for failure. We took Nora out of daycare and hired a nanny (not full time, but for when I had to work), but I know that doesn’t fit everyone’s budget. We made it work because we were so invested in making sure that there were no mistakes on the diet in the beginning. But since then she has gone to some childcare programs and we have a meeting and clearly communicate her needs and give friendly reminders. Nora starts kindergarten in the fall, so that’s another whole world of communication and social pressure for her!
Keep up the good work for your little guy. It’s so worth it. The diet is a thousand times easier than counting seizures. I have some more recipes and posts waiting in the wings, it’s just hard to sit down and write in the summer!
Stay in touch and let us know how you are doing,
Christy
Came across your blog and am so encouraged. My daughter was born December 2008 and was diagnosed with epilepsy just before her 3rd birthday. But had beenhaving seizures since 18 months. Her diagnosis has changed from absence epilepsy to myoclonic epilepsy to finally earlier this year myoclonic absence epilepsy which is less common. She has had eeg, mri, lumbar puncture and genetic testing. She has been on epilim, lamotrigine, keppra which we couldn’t get to dose on as she kept throwing up and finally topiramate which she is currently on. But none have worked. She used to have about 10 seizures a day but aas she gets older it’s now more like 30 a day. But they only last a second so she could be having lots more that go unnoticed. The most shes ever had was in August and had 89 that day. We have an appointment in Southampton, as we are from Sussex, UK. , next week. Not sure what to expect. Would love to get in touch if you could email me. Many thanks.
Hi there Naomi
My daughter has myoclonic absences and we are just starting the keto diet. Have you tried it at all?
….continued. …
Forgot to say how aggressive she is getting these last few months as we have reached maximum dosage. She gets quite frustrated, can forget what she is saying and also has just started school. I can’t wait to get her off meds and get my little girl back. Also, we call her seizures ‘body hiccups’ as that is totally what they are and is easier and gentler for kids to understand. Her eyes glaze over and her body jolts. Only top half and doesn’t fall back. But if holding cup she will spilly contents but not drop the cup as her muscles spasms so actually grips with it. Would love to hear from you. Your blog is amazing and just the support I will need if we have to start the keto diet in the near future. We’ll see what is said at appointment next week.
Hi Naomi,
I know how you feel, and I have a lot of hope that the diet will help your daughter. I’d be happy to answer any of your questions, so I will send you an email. With that history, I would strongly recommend trying the diet. If it helps, you will know, even if it doesn’t eliminate all seizures right away. Then you can start reducing meds and getting your little girl back.
I know that they have great resources in the UK and you get a lot of benefits from your health care, which we don’t get even with private insurance in the US. You also have a great nonprofit dedicated to diet therapy in the UK, Matthew’s Friends: http://www.matthewsfriends.org/. If you go to their website you will see that the global ketogenic diet conference is in Liverpool next year! I went to the one in Chicago in 2012 and it was wonderful. I’m probably not making it to Liverpool, as much as I would love to go.
All the best,
Christy
My son is 3yrs 9mo and one random morning on the way to daycare he began to have his first seizure. Its been a roller coaster ever since, he had one the next day same time so they started him on keppra, he did ok for 3 days then they came at us again on wed, then thurs he started having clusters, he was admitted and given many meds and released a couple days later. We got home from the hospital sat afternoon and sunday morning he had 5 more within 2 hrs. Hes now on keppra and topimax and had 5 days worth clomasphan. no history of this in our family, all test are coming back good.. what-else can we try??? Tired mama desprite for answers and help for my little guy.
I’m so sorry Tonya. we all know how you are feeling right now, looking for answers and help.
The ketogenic diet is now considered the tertiary treatment for childhood epilepsy. So if 2 medications have failed, the diet has a better chance of success than a third drug. “Most experts say the diet is worth trying when two or more medications have failed to control seizures, or when medications cause side effects that are having a harmful effect on a child’s life.” See this link: http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/index.cfm?gclid=CPObn7Gz07sCFQ1yQgod6j4AZw
Some pediatric neurologists are more supportive of the diet than others. If you are interested in trying the diet, talk to your son’s doctor. If s/he is not supportive, ask if there is a neurologist on staff who has experience with the diet or is supervising other kids on the diet and ask to see that doc. If your medical center doesn’t have it, do some research and find out the closest place with a keto diet center. There are several around the country. I know it’s no fun to travel for medical attention, but I’ve talked to several parents here in Oregon who have kids at medical centers that do the diet, but do not get the kind of expertise and support that we get at OHSU. Reach out to parents in your area to get advice on the right doctor, if you really want to try it. And keep reading about success stories. You have to have hope too!
All our best, please let us know how it goes.
Thank you for sharing Nora’s story. I am sorry I haven’t had time to read all of your posts, and you may have this information on your blog already, but have you received a final type of epilepsy diagnosis? My 8 year old has been diagnosed by a pediatric neuro as having what she calls myoclonic epilepsy similar to jme. She has said she doesn’t know whether it is really jme as she feels the seizures starting at age 7 is young, and they happened throughout the day. We’ll be seeing the neuro again along with an epitologist (sp?) in June. His seizures after 2 months of slowly increasing Depakote (generic) have finally stopped (on 10 days now, hope I’m not breaking the epilepsy hates you rule). So, I was wondering if Nora’s docs have settled on jme as a diagnosis for her or if there is another diagnosis. thanks again, Jackie
Hi Jackie,
Nora’s diagnosis seems to be only “benign myoclonic epilepsy.” When we were still struggling with seizure, drugs and seeing her previous neurologist, he once said that this really looks like JME, except she’s way too young, only 3. She is still really a mystery. Only a few other families we know of have experienced something like JME at such a young age, so they don’t really have a diagnosis, and the problem with that, of course, is that there is no prognosis. As one doc said, we just have to wait and see what Nora presents as she continues to develop.
Thankfully, it has been benign, meaning that she has had no other cognitive or physical developmental problems. We keep hoping to stay on that path.
I’m glad that Depakote is working for your son and hope it continues to work. We had a similar experience, except that it seemed to work for awhile until the “honeymoon” period wore off. Remember that the diet is another very promising option of 2 drugs fail.
Thinking of your, and please keep in touch if you need anything.
Christy
We are still struggling through the diet with some mistakes and breakthrough seizures. I am currently trying to get more organized and streamline our system. It occurred to me that I saw on your blog. .. when I read it months and months ago.. graphs that you used to track Nora’s seizures and various variables. I was wondering if you would be willing to send me a template of that so that I could attempt to keep track of all the variables. Right now my brain is trying to do that I it’s own and it is sometimes overwhelming. Feel free to contact my email directly if you would like to further discuss. I understand there may be a proprietary concern… But I thought it would be worth a try.
Also. .. I hope and pray that your wean is going well.
Hi Anja,
I’m sorry to hear that you are still struggling. Remind me if you are doing MAD now or on a higher ketogenic diet ratio (something over 2:1 that you are tracking with the Ketocalculator through the Charlie Foundation and weighing on a gram scale).
Ted did all of the tracking in an Excel file, so I will talk to him about that option and email you if you can use that format. We just made it up ourselves. In the time since we were tracking seizures, the Charlie Foundation posted some information about this Seizure Tracker tool, which can be used online or with an app: https://www.seizuretracker.com/
If you can check out some of these things and let me know if you still want our stuff, I can email you. I thought about emailing but decided that posting the Seizure Tracker information might be useful to others too. I don’t think there was such a thing a few years ago when we were keeping track. We aren’t weaning yet, but will start in about 1 more month.
Christy
Also I ‘re watched the video of Nora’s myoclonic seizure and it looks identical to Declan’s. We are in Ottawa. His tentative diagnosis (doctor is the head of neurology at CHEO.. But she seems like she is reserving the right to change that diagnosis. . I would call it a working hypothesis).. is atypical benign partial epilepsy, also called Pseudo Lennox. You helped me start the diet and I thank you so much for your blog. It really helps! !!!!
Interesting. Is that diagnosis based on EEG patterns as well? I think they found that Nora’s EEGs didn’t show any partial activity. I’ve never seen reference to a pseudo Lennox before, but they were kind of calling Nora a psuedo-JME for a while (unofficially) because she was far too young for it but otherwise seemed consistent with JME.
I probably have the oldest “child” on this list. Ryan is 24 and our grandson who we have raised since he was three. Seizures didn’t start until 12 and were totally controlled with tegretol for 10 years. Then two years ago he started having drop attacks, atonic seizures. In the past two years he has been on tegretol, topimax, banzel, onfi, zonegran, and I can’t remember what else. Currently he is on tegretol, banzel, onfi and Ativan for cluster seizures. He has a diagnosis of developmental brain malformation and seizure disorder is called Lenox gastau syndrome which is very difficult to control. AED meds increase aggressive behaviors and we are beside ourselves. Neurologist suggested months ago ketogenic diet but we thought it would be impossible. He demands fries and ice cream and gets aggressive when denied. But seizures are increasing and he has had lots of falls with lacerations. I have no idea what 2:1 , 3:1 means and hope to learn from this website. Anyone else in my boat?
Hi Elizabeth,
I don’t think we are in contact with anyone who is using a ketogenic diet for an adult, but I know that it is possible. You are in a tough boat. Of the stories that I have heard, it is hardest as people get older. I would as your doctor about starting slow, like trying the Modified Atkins Diet (also known as MAD) to see if it has any affect, then make it more strict if you are seeing some results. That’s what we did with Nora, and for an adult a slower transition might be more acceptable.
Briefly, 2:1 or 3:1 is the ratio of fat to carbs plus protein in a food or meal. For example, 2:1 is 2 grams of fat for every 1 gram of carb+protein in a meal. Some foods are good for a ketogenic diet in their natural state. If you look at a nutrition label, you will see that cream cheese is often over 2:1 and sometimes over 3:1, depending on the brand. Avocados are over 3:1. So it doesn’t take elaborate meal planning to get started. The key to begin is to cut out sugars and refined carbohydrates, like anything with flour in it.
French friends and ice cream are fatty, but the problem is that they are carby too. You can make a version of french fries with turnips but it will take a little getting used to (and hopefully he likes mayo or sour cream to dip them!) I make ice cream for Nora, but it is without sugar so it is not smooth and scoopable. I’ve been making a simple ice cream of equal parts (in grams) strawberries and cream, mashing them together, then freezing for about 1 hour. If you mix it up before it is frozen solid it is good. But an adult will know the difference and I’m sure it will be a hard transition for him. I know that Lenox Gasau Syndrome is successfully treated with the ketogenic diet, but I think you would have to think carefully about whether Ryan would accept it, or what strategies you can use to make it acceptable for him. If he doesn’t eat the food or cheats, then it won’t be therapeutic. You know him best, and hopefully you can get support from others who have been down this road to help with strategies. Doctors and dietitians can help you with ratios and meal planning, but it won’t work if he doesn’t eat it every day, every meal.
For more support I suggest going to the Charlie Foundation. Their support forum is here: http://www.charliefoundation.org/engage/engage-2/keto-support-line. You will find other resources on their website too.
Good luck and we are happy to answer any other questions that you have.
Christy
We have a daughter who is 13 going on 14 with the same syndrome. We have been on a long list of meds too. We just started the MADS diet along with Banzel and keppra. We just had our second week with only 2 seizures. before that there were 10 or more a day then we went down to 4 to 6 and then 2 to 3 then all of a sudden we hit a seizure free day and had up to 4 seizure free days in a row.
Since the seizures and the meds it has made our daughter more aggressive when she can’t get what she wants. Since we finally got to the seizure free days there are no more fights. She see the benefit of the diet because she is able to function and do things besides sit on the couch.
The diet is worth a try.
Congratulations Teresa. We also thought that once the diet was working and seizures slowed or stopped, we saw much better behavior too. I hope they are planning on weaning drugs once the diet seems to be working so well and you get more and more seizure free days. Good luck and keep up the good work!
Sorry for the late reply. . His eeg has 3hz poly spike wave mainly as he gets drowsy and then a lot more after falling asleep. No background slowing. Something else the meteorologist said. Was that it was happening in both sides at the same time. . But was not generalized. .she said it may all appear that way because it was simultaneous.
We went 27 days without and now he is having them again. Mistakes are perhaps the problem. I keep working on streamlining systems.
In the beginning i didn’t want to disrupt his school schedule to much. We do breakfast at 6:15 and then doesn’t have lunch until 11 (on a weekend new would have a snack by 10.. then lunch at 12:30) and then be has his snack afterwards at 1:45… .. then another snack at 4.. dinner at 6). Although the doctors approved this idea. . I think out it may be time to disrupt his school schedule a bit and space them out more evenly.
Wean still going well. I’m over the moon for you guys
Hi Anja, sorry to hear that breakthroughs are happening again, but that does happen. We got a lot more consistency when Nora ate at about the same time every day and lots of snacks. She still eats 6 times a day, 3 meals and 3 snacks. We don’t keep the carbs exactly the same from meal to meal, but we keep the ratio the same and spread the carbs out over the day. She eats snack with her class at school, but it is at a reasonable time that works for the class too.
The wean is still going well. I really should post about it again soon.
Keep at it. If it works for 27 days, it is working and worth it! All of our best.
Christy
I meant neurologist of course. . Not meteorologist. . Lol
Declan is doing tons better.. he is on his way. I would say another big change in the last year. . Is me. . Being happier. . Laughing easier again. . Not as obsessed with all things seizure and diet related. Feeling able to give my other child and husband the attention they deserve.
Hi Anja, that is the best comment I’ve seen in a long time 🙂
It really is about quality of life, Declan’s life and for each your family members. Well done, keep at it and keep in touch.
Hi Christy,
Thanks so much for this blog; it means a lot to me as a resource and source of hope! Yeah actually… the best part is reading a success story, but the information is a close second. My daughter will be three in March and has had 3 focal seizures starting at 28 months (totally well child otherwise). Her MRI is normal but her eeg shows a dipole in the left temporal region. The working diagnosis is BREC but she doesn’t seem to fit some important criteria. The reason they are going with it is the seizures always involve her mouth/speech. She is on a very low dose of clobazam and she’s had a seizure on it so not sure whether it will work for her yet. We are very interested in Keto or MAD. Our neuro thinks we are crazy given our daughter’s situation, but she actually referred us to the Keto dr here in vancouver canada and we are seeing her next week. It seems the thinking is a bit old school about who should do the diet and how it should be executed but maybe the more patients interested the more flexible the program will become. I’m just interested in hearing an epileptologist tell me about long term risks vs benefits. Right now I agree that if my daughters epilepsy can be controlled by a low side effect drug it would seem to make the most sense, but if it’s not controlled with meds, or she needs something after more than 2 yrs then I want a better plan b than a 2nd drug if it makes sense. I also want to know if there are neuroprotective effects of the diet long term compared to meds and if meds could trigger other brain issues long term. Maybe drugs work but the epilepsy comes back in a decade or two whereas it wouldn’t have if we did the diet…anyway, after all that,I was actually just wondering if nora had her mmr shot close in time to when she started getting seizures. My for my daughter it was 3 months after and I thought there was no correlation but my husband emailed me a paper today that discusses some children’s genetic predisposition to epilepsy after MMR.
Hi Julie,
Thanks for getting in touch. I know how vital success stories are when you are facing epilepsy for your child. It sounds like you are in good hands, although I have heard from my Canadian friends that their keto clinic (maybe the same one you are seeing?) is not very flexible in the use of the diet. Nora’s doctor is very flexible and the latest research shows that it is ok to be flexible and still get the therapeutic effects of the diet. Be an advocate for her daughter and do what you feel is right for her!
I’m not a scientist so I can’t answer a lot of those questions about long term neuroprotective effects of the diet or long term consequences of medications or vaccinations in relation to epilepsy. Those are all issue that we had to confront also, and part of this journey is getting comfortable with uncertainty. No one really understands what is going on in the brain and we do our best and use our best research and judgment to guide our actions. Only you have the closest connection with your daughter to feel what is or is not working for her, so keep advocating for her. I know it’s hard and exhausting, so be kind to yourself too and get as much help as you can.
All our best, please stay in touch,
Christy
Thanks so much for your most helpful and I sightful blog, Christy! Our son started having seizures at 6 months of age, and is now approaching his 3rd birthday in February. His seizures seem to be mostly controlled through medications (Zonisamide & Depakote currently) but he still has occasional breakthrough tonic-clonic seizures as well as some variety of myoclonic or atomic seizures daily (they are eye deviations, and their precise seizure category isn’t defined). He has also developed a variation of absence-type seizures that occur randomly as well.
In any event, he recently started the low glycemic index diet. He is probably only at about 75% compliance as it has been really difficult to wean him off of certain foods that typical toddlers like! There don’t seem to be many resources out there for low glycemic index diet for kids (I have found a number of recipes/ideas that sound great for me, but certainly wouldn’t work for our picky 2 year old). Do you (or anyone else out there. 😉 ) have any recipes or tips for low glycemic index diet for a most difficult and strong-willed toddler when it comes to eating?
Thank you for any insight you can provide!
Shannon
P.S. – our son is also being seen at OHSU. Small world!
Hi Shannon,
We kind of eased in using LGIT too, just learning about high glycemic index foods and avoiding them. It’s that how you do it? I think you could use any recipes you want to if you just avoid or substitute for high glycemic index foods and sugar. I’m sure it takes pretty much all processed foods out of the running though. I would look for Modified Atkins Diet recipes if I were you. You can certainly also use anything from our blog (if you want anything in common measurements that I give in grams, just let me know and I will convert it).
As far as having a picky 2 year old, welcome to the club! Nora really missed certain foods right away, but it just took persistence and time. The nice thing about a toddler is that they change so quickly and are so adaptable. Love is the most important side dish to anything you serve him 🙂
Keep us updated!
Christy
P.S., Sorry for the very late response. I get an email when there is a comment on the blog, and my email was sticking them in my spam folder. Boo.
There is a new technology watch that is designed to track seizures! Check out the link! http://igg.me/at/embrace/x/4271692
We are using mct and coconut oil as the main source of fat now. After that the atonic seizures seem to have gone away. .. but then he started having tonic seizures and now tonic clonic. They are still quite infrequent. . Once a week… i dint want to give up on thr diet. I really think it’s doing something, but am also considering adding a medication. It’s so hard to know what to do. Could the seizures type change. .on the way to getting better. .or do you think it’s a sign it’s getting worse?
I’m sorry that your son is still struggling, Anja. I am not a neurologist so I can’t tell you what the change in seizure type means. I do know that Nora started with tonic clonics, went to the scarier myoclonics (and that’s why we started the diet when drugs weren’t controlling them), then the myoclonics went away, she had a few more tonic clonics spaced months apart while still on the diet, then had no more seizures while still on the diet. That is just to say that seizure types do change sometimes, but everyone’s epilepsy is different.
If you think the diet is working, then keep trying it. You might give it more time. Usually there are signs that it is working besides seizure control, such as mental alertness or other things that just seem better but are hard to put your finger on. I don’t remember what ratio he is on, so sometimes making a change like increasing the ratio is another step toward more seizure control. After one of Nora’s last tonic clonics her doctor suggested adding a medication, but we increased the ratio a little bit more and that is when she stayed seizure free. There are several options from here, so talk to your doctor about all of the options and how you feel about the choices, because you know your child.
Best to you, I hope things get better. We will keep you in our thoughts.
we just started MAD for my 8yr old son whose been having seizures since 16 months and been through 3 meds. it is very encouraging to see that this works. DR Wray (i recognize him in that photo) is our second neurologist, and when we found out surgery wasn’t viable he suggested this. hes still on his full does of meds, but so far no seizures 3 weeks in…
Congratulations! Keep at it Kathleen, you are doing it right with no seizures in 3 weeks. There might still be bumps in the road, which is what we experienced. So when we saw break through seizures, we tightened up the diet and increased the ratio until Nora stayed seizure free. Wishing you and your son all the best!
Christy
our dietician is just telling us to limit carbs, and we have gotten down to 0-2g a day. he is missing bread, but happy about being able to eat basically as much cheddar cheese as he wants. on the other plus side, he loves eggs, so yay for that…
0-2 grams of carbs per day? That’s incredibly low, even on keto you can do 10 g per day. It is important to have a bit of carbs, because they are important for other important brain chemicals. Some kids have trouble sleeping or other issues if they are too low on carbs, so you can probably get the carbs up a little bit and make sure he is getting fat–but cheddar cheese is a great source of fat too!
our dietician says there are carbs in stuff that says 0 carbs (like his “0” carb ICE lemonade, which he drinks like its going out of style.) even his string cheese has carbs even when it says it doesn’t. so hes been getting a lot of protien (loves meat/tuna/eggs) plus his cheese we have a chart that our dietician has access too so she sees EXACTLY what hes eating. She is quick to point out if we need to add stuff. we have his first follow-up visit next week (1 month after starting) so we will see how we go from there
oh, he has partial complex seizures… when they did his 3-day eeg, he was having too many to count a day.
Ok, good to hear about the dietician monitoring his carbs, I was a little worried! Yes, there are small amounts of carbs in string cheese and other things. We did our best to keep track of all of it for Nora and be as precise as possible, but it’s all our best estimates. The most important thing is that he is happy with his diet and eating well–and without seizures!
yes, Allie is great at monitoring. but seeing as i am not a great baker (unless you like food that some how turns into bricks even when i check it constantly) pre-made food is my friend, or stuff i can throw in my pressure cooker (chicken! yay Chicken!) this diet was a hard transition since we were mostly grains and veggies with a SIDE of protein before diet. Allie put your website as a refrence for new recipes, im very excited to try them. a variety will be nice. 🙂
I’m an adult with epilepsy (30, employed, and just got married- your daughter will be just fine, even if the seizures come back) and I was trying the ketogenic diet to control my seizures. It didn’t end up working for me, but I wanted to thank you for sharing your recipes.
Making all my own meals on top of being a preschool teacher full-time was hard enough, so I was very grateful to find delicious recipes that I didn’t have to invent myself. Especially the cookies!
Now I send people thinking of trying MAD or keto diets here.
(PS- though keto didn’t work for me, the VNS did. I’m sleeping so much better now!)
Thanks for sharing your story Gabi, and it’s great to hear that you are doing well! Yes, I think that being a preschool teacher would certainly be enough, I couldn’t do it!
Hi Folks,
Thanks so much for sharing your story, tools, and recipes. My adult (21) daughter is just starting the MAD. We have the added challenge of her being nearly daily free. Thank goodness for avocados!!!
Thinking good thoughts for your daughter, and for you Julie. It’s a challenge for you too. I have known some people who have managed happily while being dairy-free too, so I’m sure you can find a way. Coconut milk is also amazing! I probably don’t have many dairy-free recipes here, but in a lot of cases you can probably substitute coconut milk or coconut cream. There are a lot of great paleo cookbooks out there too, and I found some nice recipes using coconut manna. An yes, thank goodness for avocados!
Hi, I was reading Nora’s story because our 6 year son had a partial seizure in his sleep last week whiched generalized to full tonic seizure. It went for at least 5 minutes long up to 8. He was convulsioning and stiff. Breathing slowed down and foaming started then the vomitting after it slowed down. He was in complete unawareness and for good 10-15 minutes after the seizure ended was out of it . His speech was garbled and couldn’t hold his head up. He is being worked up for migraines, rolandic and or idiopathic epilepsy . My husband is hoping it’s a fluke he had a seizure but I can’t get it through to him probably not. His seizure was long and after 10 minute falling asleep. How do you address with with your school, and family? My mom is a nurse I’m premed and we have a good support but I want to be prepared and able to deal with the next one . Any tips or info would be great . I haven’t slept in a week because I’m so scared he will have another big seizure.
Thank you,
Erin Kate
Hi Erin. That sounds like a very scary seizure because it was long, and the long time it takes to come back after a seizure sounds very familiar. It is an exhausting experience for the body and takes awhile to recover. We were also hoping it was a fluke after Nora’s first seizure, and maybe it is, but you should be prepared for dealing with epilepsy. Just remember that many people live successfully with epilepsy, and if it is something like Rolandic he will be just fine. Our neighbors’ son was diagnosed with Rolandic when he was a young boy, and now he is a grown up engineer who is newly married and likes to climb mountains in his spare time!
Nora was in preschool when her seizures started. She had her second seizure while at preschool, and they called 911 and we met them at the hospital. All schools should have a seizure protocol, and if your doctor prescribes a rescue medication it should be kept at school and school personnel should be trained to use it. They will also call 911 right away, in our experience. Her seizures were under control by the time she was in elementary school so we never had to deal with that in school again.
Anyone who is supervising your son when you are not there should also be trained in handling a seizure. It is so scary, but after you have seen a few of them it is easier to handle. As a nurse, you probably handle similar issues for other people, but it’s tough when it is your child. If he does have another seizure, it is likely that he will come out of it ok again, but you will start working on seizure management. Hopefully his doctors will have a diagnosis so that you can know what to expect. The hardest thing is not knowing what to expect or the best way to treat the condition, and the treatment will depend on the diagnosis.
I hope that you have a diagnosis soon, and some guidance about what to expect and the best treatment method for his situation. We will keep you in our thoughts.
Christy
my 1 year old niece was diagnosed with epilepsy. its been so scary for all of us. It would mean the world if i could get in touch with someone who has experience this first hand and that can give us any advice. Please help/
Hi Paulina, our heart goes out to your whole family. Epilepsy is scary and stressful, and it’s especially frustrating because your niece’s doctors will do their best, but the brain is mysterious and there isn’t usually an easy diagnosis or sure-thing treatment. The best thing that you can do is support each other and your little one. Educate yourself so that you can ask questions of her doctors and be actively involved in her treatment plan. Ted wrote a couple of great blog posts that might help with coping:
Managing Stress
Caring for the Caretakers
We are parents, not doctors, and don’t know anything about your niece’s situation so we can’t say anything medically. But we can tell you that epilepsy is manageable and childhood epilepsy can sometimes be treated successfully and put into remission, like Nora’s. The latest medical wisdom is to find the right treatment as quickly as possible to get seizure control, if possible. Don’t just resign yourself to the first medication that they prescribe if it isn’t working. If it isn’t controlling the seizures, press the doctors to try something else and keep track of seizure counts, types, time of day, etc. That is super helpful to doctors, because they can’t see the whole picture. They are not with your niece all day. And anything that you can do to support her parents will help her.
You are not alone! It is a stressful journey, but it can be managed with a lot of love and support, and good record keeping and communication with her doctors.
Christy
Hi Chrisy,
Thank you so much for sharing, you all are amazing parents! We are at the beginning end of your story: young one started having grand mals a year ago, put on keppra (terrible behavioral side effects), started noticing myoclonics, put on zonisamide (which is causing cognitive side effects) and we still don’t have seizures under control. I brought up doing a modified diet when we were first at Seattle Children’s and they brushed us off. How did you get your doctors on board? Thanks! 🙂
Shoshana
Hi Shoshana, our hearts go out to you, going through this with your kiddo. It’s a tough road but you are doing the right thing to look at all of the options and do your homework in consultation with your neurologists.
We brought up the diet with Nora’s first doc at Oregon Health and Science University. He was head of pediatric neurology at the time, and he brushed us off too by telling us how hard the diet it. But when Nora’s seizure activity really ramped up and they got us in for a 24-hour EEG, their keto-trained neurologist had just come on staff. He did his residency with a keto program, and Nora was one of his first patients. He was right on it and was wonderful to work with.
You are in Seattle, so you could see if they have a keto program or a doctor who has done keto before. Look through all of the doc bios and see if you can find anyone. If not, you might ask to get a referral to Carter Wray at OHSU (of course, insurance and other barriers are going to be in the way). Talking to a doctor who has keto diet experience would be a better way to find out if it is a good option for your child.
We also just started on our own with a low glycemic index diet (LGI). That’s the mildest form of diet therapy, avoiding any quick blood sugar spikes. There is absolutely no harm in trying that (we could all do with less sugar). You might get a sense about whether you see any difference, and it’s a way to ease in to diet therapy because you can start training your child that we don’t eat certain things. That’s the toughest part of the diet, but it’s way easier than watching your kid have seizures.
Best of luck, be in touch.
Christy
Thank you Christy! We started the LGI diet and have already noticed a reduction in myoclonics! We now have an appointment at the keto clinic at Children’s Hospital. All this was inspired by you sharing your family’s journey. And thank you for showing me what it looks likes to come out the other side. Warm Regards, Shoshana
That’s wonderful Shoshana! That was our approach too, which gave us more credibility with our doctors when we pushed to start on the diet. It’s an easy test to see if it is going to help, so you are starting on this journey! Feel free to be in touch as you get going. It’s hard, stressful, a big learning curve, but you will get into the groove and if it’s controlling seizures, it’s totally motivating and you will keep at it!
Christy
WOW! Just come across your story. Thanks you so much for sharing. Our boy is 2 and a half and has just been admitted with possible Juvinile Myoclonic Epilepsy. He is having about 40 small jerks per day and has only had one tonic-clonic seizure so far. It still needs diagnosing. Bloods and urine have come back fine but he needs an EEG. Possible MRI.
I will now have a serious think about Diet. He is being put on CLOAZAM as a baseline drug. I will read all the comments in earnest to try and learn anything new.
Very new for me and my wife. We are a mess. So scary. But we aren’t alone.
Ben, so sorry for the delay. An overly aggressive spam filter caught your comment. Please let us know if we can do anything to help.
our heart goes out to your whole family. Epilepsy is scary and stressful, and it’s especially frustrating because your niece’s doctors will do their best, but the brain is mysterious and there isn’t usually an easy diagnosis or sure-thing treatment.
I’m not sure if you still reply to emails. I have questions in regards to vitamins and supplements.
Fran, yes, sorry we don’t check the comments so often anymore, but I am happy to help. Ask away.
Ted
Nora
Please call me.
My daughter is diagnosed with doose and I keep reading your story.
We are at the hospital and need some of your advice
I am a doctor and feel I need to turn to
You
323.633.5419
Are you still struggling. I’m happy to help via email.
Ted
Hi Christy and Ted,
I wrote on another post but hadn’t read Nora’s history yet. Her story sounds very similar to our 3 year old son. He also had typical, if not advanced, development. His epilepsy started with tonic clonic seizures that would typically last past the five minute mark requiring rescue meds. As we introduced medications, he started having what appeared to be myoclonic clusters. I’d love to email you a video of what his look like to see if it is at all close to what you saw with Nora. Sometimes these clusters seem to go into a tonic clonic seizure requiring rescue meds.
He has had an MRI, whole genome sequencing, mitochondrial lab work, invitae gene panel, metabolic tests, and we are awaiting results from the micro array genetic test. So far, everything has been negative or normal. He’s also had three 24 hour EEGs and a three day EEG. He’s had a “slow background” in the last few EEGs, but I’m wondering if that’s not due to all the medication he’s on. On the three day EEG we finally caught one of his larger five minute long seizures. They appear to be generalized. We still don’t have a formal syndrome or diagnosis for his type of epilepsy. With how much knowledge and experience you seem to have with childhood epilepsy, I was wondering if his story sounds like anyone else you’ve heard from.
As I mentioned in a previous post, he is on four different AED‘s currently and often requires Klonopin or Diastat to stop clusters or a longer seizure. I’m hoping and praying that the keto diet is the answer to our problems. We have an appointment with Cincinnati Childrens to go over the diet requirements and how to implement it. Hearing Nora’s story gives me so much hope.
Hi Carrie, sorry for the late reply. It sounds like Nora’s case was much milder in terms of length of seizures. She didn’t have such strong myoclonic clusters either, although the day I started counting dozens by mid-morning I called and got her in for an emergency EEG, which is when we first met the keto diet doctor. She was only on 1 drug at a time, then the diet, and when she had several months seizure-free we convinced her doctor to let us wean the last one (Depokote) too.
With the big disclaimer that I’m not a doctor (not a doctor at all!) I have heard from doctors and parents that some medications that work for adults can cause other types of seizures in kids, like myoclonics. Other stories suggest that weaning from medication is was important for durable seizure freedom while on the diet. So definitely try the diet, but it’s like adding another “medicine” to the mix. Getting into the keto clinic and talking with those doctors, dieticians, and connecting with other parents may open up possibilities for weaning some of the medications to see if the diet can work.
I understand so well that it’s scary and complicated. You know your kid better than any doctor, and you are his advocate. Our doctors were great partners in Nora’s care. We brought so much data and observation that they saw us as experts in our own child’s care. I know that all doctors don’t think like that, but I think that it is more common in a keto clinic setting where you have so much responsibility and effort into every moment of your son’s life. You really have to develop a partnership.