The end of summer is upon us; Nora and her brother will be starting school this week, with Nora entering the third grade.
It’s been a good summer. Nora has been healthy and happy, enjoying countless hours listening to audiobooks and setting up playdates with friends. Last April we quietly celebrated four years of seizure freedom, and about two years on a reduced version of the ketogenic diet. For the last year and a half or so we’ve been estimating Nora’s portions, focusing more on limiting carbs and matching carbs with fat and protein in proportions roughly equal by volume. For example, if Nora wants some fruit, we ask her to eat an approximately equal amount of cheese or nuts (she usually prefers cheese.) Ideally we’d be at something like a 1:1 ratio, which would be close to a MAD diet, but I think many days it is probably less than that and something more like a low glycemic-index diet.
We’ve felt more comfortable traveling. We took the train back to North Dakota — a nearly 30 hour ride — to visit family this summer and had no trouble feeding Nora with a combination of carefully selected retail food or foods we brought with us.
For a fun treat we’ve recently found the “Coconut Bliss” brand of ice cream, which is around a 1:1 ratio. Nora loves it, and I admit I feel a great delight in allowing her to enjoy an off the shelf ice cream product without much restriction. It has 17g of net carbs per serving, which would have been much too high to fuss with back when Nora was restricted to 10 g of carbs per day, but now I feel comfortable with her having it due to the 19 g of fat that goes with it. (As an added bonus, it’s made nearby by a Eugene, OR company.)
Nora has grown tall and strong, with absolutely no signs of any growth delay she may have had while on the carb and protein restrictions. As I type this, she is swinging and climbing in a small tree in our backyard, like the primate she is.
Cognitively Nora is sharp and very strong with language; she has a very large vocabulary and greatly enjoys mystery books and theater. She speaks well and reads well. She’s a natural organizer.
She does struggle with certain abstract concepts, such as music notation, analog clock reading, and mathematical procedures. Of course these are not unusual struggles for any kid, but I would say Nora seems to struggle just a little more than average — whatever that may be — with these sort of abstractions. I wonder sometimes if these minor struggles are related in any way to any cognitive delay that would have been related to the epilepsy, as myoclonic epilepsies are usually correlated with cognitive delays or regressions. But I feel there’s really not much evidence of that; it’s quite likely that Nora is just a very normal kid with some strengths and some areas to improve. Watching her develop I’ve never lost the gratitude that she is doing so well. I will never take her health for granted.
It was about one year ago I wrote a post about Caring for the Caretakers. Nora’s epilepsy really took off in the fall of 2011, so I think I associate the fall with those difficult times. This fall I find myself thinking of it again, about our journey and also about those that are still struggling or will soon be sent tumbling down that path. So again we want to remind our fellow parents and families that you are not alone. Epilepsy can be so difficult, and scary, and unfair. It is OK to acknowledge how hard it is, how scary, how unsettling, how frustrating, how limiting. When we are hurting, we must take some time to acknowledge our pain, and also to have our community and supporters acknowledge the pain.
To all the parents and caretakers and families out there, I say: I am so sorry this has happened. I am so sorry this unfair and scary thing has set upon someone you love. I am sorry it hurts. Cry and rage if you need to; give yourself space to acknowledge the hurt.
When you’ve had time to be with your pain, pick yourself up and put one foot in front of the other. Keep going. Each difficult day you make it through is one less you’ll have to deal with. If you are in the midst of a miserable time, remember that it will not last forever, there is a better day out there in your future, for you and your child.
We are here to help. Please leave a comment if you need an encouraging word, or a space to vent. No one is alone in this.
If you find that you daughter is still struggling with math, try sending her to school with a lunch with coconut oil or mct oil in it and have some coconut oil for breakfast. I have found my son’s math and science marks really excelled (from 65% to 95% – very significant increase) with MCT oil. He has scrambled eggs cooked in refined coconut oil for breakfast along with a muffin which has extra virgin coconut oil in it. He has a low carb pita sandwich with mct oil sprinkled on it for lunch. There are a lot of sugar free muffin recipes (sweetened only with mashed banana) on the bakerita.com website and a lot of other websites.
I’ve perused this website many times in the past year and a half and am thankful for a parent’s perspective, help and advice, and hope… My son’s first seizures were tonic-clonic, and then he started having myoclonics and absence with increasing frequency. Multiple neurologists would not entertain a diet therapy for him but we have finally landed with a team to oversee MAD. My son is currently about 2 weeks into ketosis and we are seeing a HUGE improvement not only in seizure control but also in cognition and sleep patterns. However, there’s still been multiple breakthrough seizures, which is disheartening, and I am wondering if we just need to give it more time, need to increase the fats, or if we’ll need to switch to the classic keto diet and start calculating grams and ratios, etc. It seems like it took you guys some time to find the right diet for Nora. I’m just worried that if I don’t get it right the first time, it will somehow lower the chances of him being successful on this diet. I’ve read the Caring for the Caretakers post multiple times and it is so helpful… epilepsy is incredibly emotional for the parent to watch, and life has definitely gone in a different direction since my son’s diagnosis. I am hoping for a complete healing and success story for my son. So happy to hear success stories like your family’s!
It is great to hear from you!
First, if you are seeing improvements, I think that indicates that you will continue to have success. That’s not a guarantee of course, and whatever is causing the seizures can be changing in the background, but it is our anecdotal experience based on talking with other families and hearing other stories is that if the diet works, it tends to keep working, and it tends to work better the more keto you go (up to some point where you balance its effectiveness with side effects, your son’s compliance, and your ability to administer it.)
Second, I would say go ahead and crank up the ratio and go full keto — assuming you have a medical team to help you. You don’t have much to lose by trying. If it becomes problematic, or you don’t see continued improvements, you can drop back down to MAD, no problem. If it does work well and improves things even more, it will be well worth it.
So I wouldn’t be too concerned about getting it right the first time. If you find something that works, it will probably keep working. Although it does seem to take a little time to recover from set backs. The few times that Nora had breakthrough seizures, it would usually herald a stressful week or two period in which the seizures returned before we could beat them back again. So try to pay attention to weekly or monthly trends instead of daily ones.
One thing that no one seems to know — and I am quite curious about myself — is this. Consider two scenarios:
1) Kid on MAD. Still has occasional seizures, but the kid keeps improving, eventually getting long periods of seizure freedom, and perhaps eventually becoming seizure free after many years on MAD.
2) Kid on full keto. Seizures reduced to very few or none. Stays on full keto for two years then comes off.
Is 1 and 2 equivalent? Does clamping down hard for an intense, shorter run on the diet have the same benefit to a longer, more moderate run on MAD? I don’t know.
Anyway, it’s great news that it seems to be helping. Keep going. I would say seriously consider going full keto, or as high as you can go with respect to compliance, side effects, and what you can administer. You have little to lose and potentially much to gain.
PS With regard to your question about being patient. Yes! If it seems to be helping, keep going! The general advice is to go three months and then evaluate. So if two weeks in has already been better, that definitely indicates you should give it more time!
We are about a month into our keto journey. My 4 year old had/has drop seizures and tonic-clonics as well as some myoclonics. We started on MAD as well and immediately saw improvement in his drop attacks, but the t.c.s started increasing. Well, we went ahead and went to classic keto, hospitalization etc. He is on a 3:1 ratio currently, as he couldn’t tolerate the higher ratios. We have seen his t.c.s go from every week to every two weeks so far and always in the early morning. The past two have been when he has woken up briefly and gone back to sleep. Praying the diet continues to space the seizures out, but we are so grateful for the quality of life improvement it has been able to give our little guy. Your blog has been instrumental in guiding me towards this treatment and I will be ever grateful that you guys have taken the time to share and inform people of the ketogenic diet. Wishing you guys continued health!!
Congratulations Katie! If you have read some of the older posts, you will see that Nora has a similar pattern–losing the myoclonics and having tonic-clonics again, then those spacing out until they didn’t come back. I hope that you will get there with your little guy too, and I think there is great hope that you will! We know that it’s a long and exhausting journey. You are a hero for your little guy, going through so much effort and heartache, but it will all be worth it. Please stay in touch and let us know how it goes!
I felt it only right that I should let you know that this post and your ‘caring for the carer’ post was a solid strength a week ago when my eleven year old son had a cluster of particularly severe seizures! As I sat feeling completely helpless beside my sons bed afterwards I decided to read through your blog. Your feelings and experience and words of comfort was a soothing thing for me and gave me the strength to carry on doing all I can to help my son. Thank you so much for taking the time to encourage and uplift those of us who are still hoping for seizure freedom. Like you we started our son on MAD in January 2017 after a year of taking medication that was not working to control his seizures. MAD improved things and our consultant gave us the go ahead to wean him off and try diet therapy for four months. That was in July and sadly he had a spate of seizures after coming off the medication. After the seizures he had a week ago he is now on a 3.1 ratio keto diet. Since then he has slept more peacefully than ever before. But I am scared! So scared that once again we are trying something and it might not work. I am a resilient person but epilepsy has been a tough battle. However the diet does seem positive. I am hoping I will be able to administer the diet well for my son. Today I am worried as he has gone over his carb count a tad bit for the day and now I am worried about whether there will be a seizure as a result. Its so hard not to get overwhelmed by the whole thing. Anyway thank you for this blog post it is a beacon of strength.
Epilepsy is so difficult. We know exactly what you are going through and what you are feeling. It’s scary and uncertain and you are always waiting for the other shoe to drop. Hang in there and reach out to us if you need help! Both my wife’s and my emails are available through Oregon State University.
Try to be patient. I think your doctor is wise to try several months on dietary therapy. A few lucky people get almost immediate seizure control but for most it will take some time. If you think you are seeing a benefit, that is a good sign, but also be open to the possibility that the diet will not provide total seizure control. It varies from person to person and between different types of epilepsies. The important thing is to keep working at it until you find some combination of treatment or therapies that work. Hang in there and be persistent! Your son is still young and changing so much year to year, so I am hopeful things will improve once you make it through this rough patch.
And don’t be hard on yourself if there is occasional mistakes in the diet. It happens to everyone. Hang in there and do the best you can. It’s a marathon, not a sprint. You and your son can make it through to better days. It might take a bit more time, but you’ll get there.
I know it’s been a while but thank you so much for your response I cannot tell how much it encouraged me! You, your wife and Nora are in my thoughts daily as I care for my son. I picture all the positive things I’ve read on this blog and it keeps me motivated as I go about preparing and calculating foods for my boy.
The good news is my son has not had a seizure since I last posted 10 weeks ago! So the diet is totally controlling things so far. He is not on any medication and his blood tests have come back good/normal! Our next appointment is at the end of January and I hope we can get a chance to discuss more food ideas with a nutritionist. Sometimes we feel he is having so much cream it can’t be good for him?!!! I’m struggling to be creative and keep him happy with his food.
Thank you again so much for this blog! It’s funny that I feel akin to you all because of our shared experience and your kind and positive help. When we feel stuck sometimes with different diet issues my husband and son often ask what would Nora’s parents do? This is testament to how often they have heard me refer to Nora!
Best wishes to you all and I hope you had a wonderful Christmas
It is true that variety is limited on the keto diet. Don’t be afraid to really lean on the few foods or combinations that he likes. Breakfast, lunch, dinner: whatever, just get through it. It won’t last forever. Nora often had the same breakfast, lunch, and dinner many, many days in a row.
One little trick is serve the same food, but just vary how much you cook it. For example, one meal might be strips of cheddar cheese rolled up in ham, but another meal might be the same thing but fried in a skillet. Red peppers raw vs. red peppers fried, etc.
The same food but prepared differently might provide some much needed variety.
Hang in there. It takes a lot of work, but we’re so pleased to hear your son is doing well. Also, be prepared that you might have some relapses. We experienced that, as did many people we’ve talked to. If that happens, just keep going.