“In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face.  Fasten your own mask before assisting others.”

I want to write about what the caretakers, the parents, the loved ones, feel when our children are affected by epilepsy.  My goal here only to relay what it has been like for me, in the hopes it is helpful for someone.  It seems each caretaker responds a bit differently to this situation.  For me the experience has been, at its worst, highly emotional and exceptionally difficult.  In the most difficult times, I greatly depended on hearing the perspective of others who struggled too.

Epilepsy is terrible.  Seizures are terrible.  They are frightening, disruptive, and can be dangerous.  They are a demonstrative indication that something is wrong.  Part of me hates them.  I hate the way they look and sound.  It connects to some very primitive part of my brain — probably the same part that recoils at the sight of blood, or a grotesque injury, or the macabre — that says “something is very wrong.”

Nora’s seizures were the most difficult thing I’ve ever dealt with.  They triggered a primal response within me to defend her.  I felt as though she was under attack, that there was a monster with her or within her.  I would daydream that I could make the monster real, something I could see or touch, something I could pitch all of my fear, anger, and frustration against.  But I couldn’t do anything for the seizures but wait and watch.  So I took data; lots of it.  I recorded the number of seizures she had in the morning, afternoon, and evening, as well as the medication dosages, how she slept the night before, whether or not she had a nap, what foods and supplements she had.  I made models of pharmacokinetics to estimate how much medication she had in her blood at any hour of the day.   I ran regression analyses to try to determine correlations to seizures with any of those factors, even including some time lag factors.  At the end of each day I updated my plot of the number of seizures per day.  Data keeping was a way for me to feel like I could do something.

One of the most challenging aspects of adapting to the new reality was that it was always changing.  It was a roller coaster.  First there was the shock of the initial tonic-clonics, then a period of hoping it was an isolated incident, then the disappointment of their recurrence, then the appearance of the myoclonics, again the hoping it was isolated, then learning about the terrible prognoses that myoclonics can signify, then an improvement in seizures as we changed medications, then a steady march of the myoclonics’ reappearance and worsening.  Each brief period of relief and hope dashed with growing evidence that this was not going to be easy, that Nora may be impaired, that we will have to adapt to life as parents of a special needs child.  I’m not a superstitious person, but I began to feel that to dare to hope or smile was just to invite the pain of falling when those hopes were dashed.

Mornings were the hardest.  I woke up each day on the edge of tears.  I would lay there in bed, waiting to hear Nora’s feet on the floor as she walked to our room to cuddle with us for the 15-30 minutes or so before we got up.  The daily seizure count started almost immediately.  As Nora laid with us, she would typically have 1 to 3 myoclonics.  Time to get up.  My feet felt leaden.  “One foot in the front of the other” I told myself so many mornings.  I trudged to the kitchen to put the tick marks on the refrigerator whiteboard, already anticipating if the daily seizure count would be above or below normal.  If the trend was down, or up.

I was teaching a course that term — power electronics.  I remember many mornings standing before my students as they chatted with each other in the minutes before the start of lecture.  I would have my face down, pretending to read my course notes as I fought back tears.  Take a deep breath.  “OK class, let’s get started…”

I started to break under the constant pressure and stress.  The first and only genuine panic attacks I’ve had in my life started coming.  I remember one morning when she was a few weeks in on the switch from Keppra to Depakote.  As we made the switch, her seizures dropped dramatically.  She even had a few seizure free days.  But then they started back.  A little bit more each day.  This was the most devastating time for me.  There was no sugar-coating it: it was very bad news to have the myoclonics marching back through the new drug.  This particular morning I was getting ready to leave and happened to glance over at her as she played near the couch, just in time to see a myoclonic.  I felt the rush of hormones; the involuntary chemical cascade that tightened my chest and made me feel nauseous.  I remember pacing back in forth in one spot and clenching and unclenching my hand.  I felt like I was going to pass out.  I felt uncomfortable in my skin.

I started to find it hard to be around Nora.  Of course I loved her as much as always, but I just couldn’t handle the seizures.  I would eat dinner standing in the kitchen instead of sitting with Christy, Anders, and Nora at the dinner table, as the dinner table seemed to be a prime time for seizures.  Christy started to feel the stress of my stress too.  So I started to branch out.  I got much help from my other family friends, and I also started going to see a professional counselor to help me with anxiety management.  Another excellent resource that really helped me was Michael Koskie’s book “Diet for Seizures,” which discusses his family’s use of the Modified Atkins Diet for their daughter.  He has a section in the book on the emotional impacts to the parents that was very helpful.

When we switched to the diet and Nora improved, it brought me the much needed time and space to heal.  There are still times when I feel the anxiety and fear come back, particularly if Nora is twitchy in her sleep, or if she is sick.  But on the whole I’ve gotten much better, although it has taken a lot of time and persistence.

So we want to say to those whose hearts ache for their children and the uncertainty of their well-being: it’s going to be OK.  Even if you don’t see how right now.  Trust me.  You are going to be OK.  Your little girl or boy is going to be OK.  It might seem so hard and scary right now, but it is going to get better.  That doesn’t mean there won’t be more challenges or more seizures, or that it won’t take a while more.  But it will get better.  Keep going.  Breathe deeply and keep going.

Misc words of wisdom:

• Kids are really, really tough.  They don’t feel sorry for themselves.  They just keep going.  Take inspiration from their energy and happiness even in the presence of seizures.  I remember being with Nora in the emergency room between tonic-clonic seizures (she had one about an hour prior, and there was one coming in just a few minutes, although of course I didn’t know it) and she was examining my cell phone with such interest.  I felt sad and scared, but she didn’t care that she had just had a seizure.  She wasn’t sad or scared.  She was being an inquisitive child, as always.
• Each hard moment you make it through is one less on your path.  Your child is going to have X number of seizures between now and seizure freedom.  Each seizure means there is X-1 left.  Each day you make it through brings you and your child closer to better medical knowledge of epilepsy diagnoses, causes, and treatments.
• It’s OK to be angry, sad, and scared.  Stop and cry and when you need to.  When it is time to get going again, put one foot in front of the other.  One day at a time, one hour at a time, one step at a time.
• Use your friends and family to give yourself breaks from epilepsy care.  It doesn’t mean you won’t stop worrying or constantly checking your phone, but it will do you good to get out of the house and in the company of others (e.g., your work, your friends, your hobbies) for a while.
• Though it can be hard, be grateful for what you can.  It can always be worse.
• If you have a partner or spouse, recognize that sometimes the stresses of epilepsy will stress your relationship too.  Take care of each other.
• Go see a professional counselor.  Your medical plan may cover it.  A counselor will be able to hear you out and share specific stress management techniques that your partner may not.  Counselors helped me with anxiety management.
• Your child’s condition is not your fault, nor anyone’s doing.  Human physiology is complicated and messy and sometimes things go haywire.  What’s happened has happened and that’s that.  There is no meaning to it.  Having kids is tough business. We have no guarantees on their safety and well-being.  When we have kids we take our hearts and put them outside of our bodies, at the mercy of entropy and the unknown.  All you can do is the best you can do to care for them and love them.

Keep going.  Breathe and keep going.

Any words of wisdom from other parents and those affected by epilepsy are most welcome in the comments.

Continued good news: Nora is down to a 1.25:1 ratio today and still seizure free. We are in the home stretch!

Just a word about the “ratio” for newcomers to the ketogenic diet. Remember that the ratio is the amount of fat per amount of net carbs+protein in a food (and remember to first get net carbs by subtracting fiber from total carbs; fiber is good!).

Example: In 100 g of macadamia nuts, there are approximately 80 g fat, 6 g net carb and 8 g protein. The math:

80 g fat /(6 g net carb + 8 g protein ) = 80 g/14 g = 5.7
Thus, there are about 5.7 g fat for every 1 gram of net carbs + protein in macadamia nuts. They have a ratio of about 5.7:1.

The ratio is a “magic number” in the ketogenic diet, with higher fat telling your body to use fat as an energy source by turning fat into ketone bodies for fuel. The traditional form of the diet uses a 4:1 ratio. Nora’s highest ratio was 3.5:1 for 2 years. Since April we have moved it down by 0.25 increment steps (so 3.25:1, 3:1, 2.75:1, etc.) every 3 weeks.

As we have moved down the ratio step by step, I’ve realized that I have a way of thinking about keto foods by ratio when I am building a meal. In the beginning of the diet, the big challenge is to think low-carb. Then you add in the fat needed to get the ratio. But after doing this for so long and having a broader range of known low-carb foods, I’ve started thinking about foods by their ratio instead of their carb content alone. That helps us create keto meals that use naturally high-ratio foods, rather than taking big doses of fat on the side, and that gets much easier as we move down on the ratio.

The spreadsheet that we made to calculate meals shows us the ratio of each food that we are using, so as we changed ratios over the last 6 months I realized how much I was using that knowledge about the ratios. I hope that explaining it and giving some examples can be a guide to others.

At very high ratios, there are very few foods that are above the keto-standard 4:1 ratio on their own. Fat sources are critical to boost the ratio of any meal. All-fat foods that are served to achieve a high ratio are: heavy cream, butter, oil (Nora takes fish oil, others use lightly flavored oils like canola), and coconut oil for its ketone-availability.

Low-carb foods that Nora eats regularly but have very little fat: berries, red pepper, carrots, popcorn, apples, low-carb tortilla (Mission Carb Balance), sliced turkey or ham. We have to serve enough fat, either through the all-fat options or higher ratio foods in order to meet her fat needs at her current ratio.

Here is a table of regularly-used whole foods organized by their ratio, amounts given per gram of food served. Each color indicates a different ratio range:

Red = greater than 4:1
Orange = between 3:1 and 4:1
Green = between 2:1 and 3:1
Blue = between 1:1 and 2:1
Purple = Less than 1:1, but not insignificant fat content

If you start by thinking about your child’s ratio, you can see the foods that are above and below that ratio. Higher-ratio foods can support or increase the ratio when paired with lower-ratio foods. At the traditional ketogenic diet ratio of 4:1, macadamia nuts and kalamata olives are superstars, with avocado not far behind. But even though you can’t make a 4:1 meal without fat supplementation (actually you could, but it would be a lot of macadamia nuts!), you can choose higher-ratio foods in order to put less fat on the side.

If you move down the ratio to 3:1, you get a few more of those helpful foods. We looked at all of the cream cheese options at our grocery stores and use a brand called Primrose, which has a higher fat content than some other brands.

It’s interesting that there are not many whole foods in the 2:1 to 3:1 range (green) that we use regularly. Sour cream was the only other one in my master list, but Nora doesn’t like it. Some brands of cream cheese fall into this ratio too. Many of the baked goods I make are in the 2:1 ratio because you can mix fats, nuts, eggs, etc., to end up with a 2:1 ratio item.

When we went below 2:1 on Nora’s wean schedule, I realized that there were a lot more foods on either side of her ratio and it got me thinking about foods by their ratios. Now that we are at 1.25:1, Green & Black’s 85% dark chocolate is above her ratio! We can put dark chocolate on berries, maybe with some nuts on the side, and have a perfectly delicious at-ratio snack without a side of cream.

After our next step down in 3 more weeks, Nora will be at 1:1 which is considered the Modified Atkins Diet (MAD) and we can start estimating meals. Knowing which foods are above the 1:1 line, and which are just below the 1:1 line, will help us make combinations of food that keep her meals around 1:1 without all of the calculating and weighing.

This list also shows some interesting contrasts. Just look at the nuts. Macadamia nuts are a stand out by any measure. It is amazing that they stay solid when warm! Walnuts are also excellent. But almonds are pretty far down on the list as a ketogenic diet food. They are not bad, but if I were going to give nuts to Nora I would choose a higher-fat nut that does not require fat supplementation (if possible). Peanut butter is also fairly low ratio, although we would normally think of it as a creamy high-fat food. We have always supplemented it with fat by mixing it with butter. Almond butter is actually a better keto-choice because it is lower carb and higher ratio.

Cheeses are interesting too. Cream cheese has always been the keto diet food of choice. But cheddar (and Monterey jack, which has the same ratio as cheddar), beats out whole milk mozzarella. Both beat out string cheese, which was one thing that was hard to take away from Nora at the beginning, and is not going to be a go-to food even after moving to MAD because it is well below 1:1 ratio. Nora also loves cottage cheese, but it is very low ratio. She enjoys cottage cheese swimming in cream, like cottage cheese soup! It is easier to add fat to cottage cheese than string cheese.

Proteins are the same story. Eggs, pork and beef are higher in fat than chicken and fish, as we all probably know. But even in the chicken category, chicken thigh is 0.42:1 ratio and chicken breast (not listed above), is only 0.12:1 ratio. And chicken thigh is cheaper and tastier, an all round better choice.

There are a few fun discoveries on the list. I love that edamame has both protein and fat. It’s a fun veggie that works on the keto diet or MAD with other fatty foods. Traditional full-fat Greek yogurt is at-ratio right now for Nora! She has it for breakfast every morning, topped with a few berries and some of her granola (the current recipe I made is 2:1 and balances out the berries). The Flackers that she enjoys are now above-ratio too. But even if your child is on a higher ratio, they are a cracker that fits well with the diet and can be topped with a high-ratio food like cream cheese and butter.

No matter where the ratio lands in a diet therapy, you can make meals more palatable by serving some high-ratio whole foods and not putting so much fat on the side. It gets easier at lower ratios when you have a larger selection of foods that are naturally above a 1:1 ratio. These are natural, healthy foods for any body and even better for anyone on a diet therapy for epilepsy or other medical reason.