I’m well aware that this may not last, but that isn’t going to stop me from appreciating this moment. So today, we’re celebrating!!
Does that seem harsh? I’ve cut back on carbs, but I do still eat some in front of Reese. I don’t draw her attention to it, but I have chosen not to hide it.
When we’d eat at Chipotle, I used to share my burrito with Reese. She would nicely say “bite, please?” and I would oblige. Then I’d have a bite, she’d wait her turn, and then she’d say “bite, please?” and I’d give her a bite and so on until she was full.
The first time we went to Chipotle after Reese started the diet, I thought it was going to be tough. She knew the routine and angelically said, “bite, please?” This time, I said, “No, this is mommy’s food. You have your food.” And that was that. She didn’t complain. (This is why I think that somehow she knows she’s feeling better and that the diet has something to do with it.)
My son loves applesauce and Reese used to enjoy it as well. While Reese gets her food, Nicholas gets applesauce sometimes.
People ask us if we’re planning on going keto as well, and the answer is no.
My husband and I feel that this is just one more way we’re treating Reese as normally as possible. Many people have different dietary restrictions – for example, Matt is allergic to nuts. She’s going to be constantly surrounded by foods that she can’t eat and will need to know how to handle it. We can’t keep her in a bubble, nor would we want to.
Children adapt. We probably don’t give them enough credit.
The problem with starting the ketogenic diet on New Years Day is that the ketogenic diet is a really trendy diet for weight loss right now. It’s practically everyone’s New Years resolution! And since it’s become so trendy, things are being marketed as “keto” or “keto friendly” everywhere you look. Often, they’re actually not very keto at all.
Everybody thinks they know what the ketogenic diet is. Truth be told, I would occasionally make a dinner recipe that had keto in the title and think I knew about the ketogenic diet also. Often, those recipes are low carb but not actually high fat and fairly high protein. Outside of websites specifically for epilepsy, I have yet to come across a keto recipe that lists the ratio alongside the nutritional facts. I’ve since learned that keto for weight loss is vastly different than keto for epilepsy.
I consider myself a pretty live-and-let-live person, so whatever diet a person wants to follow is fine by me. The trouble I’ve found is that people have heard about keto for weight loss and therefore think they know what Reese can eat.
But even if a recipe were to be a 4:1 ratio, I couldn’t just haul off and give it to Reese. It would need to be planned and accounted for.
I love that people want to get involved and offer to make keto recipes for Reese. To be fair, if this were happening to someone I knew, I’d probably be doing the same exact thing. But unfortunately, I can’t accept their offer and it bums me out. I’m just not comfortable with any variation from what I’ve planned. For me, the downside of straying from the diet is too great.
One night Matt and I decided to have dinner at a casual burger restaurant in our area. As I was packing Reese’s meal to take with us, I considered getting Reese a burger patty at the restaurant as part of her meal. Maybe it was a moment of weakness. Or laziness. Or perhaps it was wishing for more normalcy. But was the ground beef 80/20? 85/15? 90/10? Was anything mixed into it (maybe a filler, or vegetables)? What type of fat was it cooked in? There were too many variables and I started to get anxious about it. I have rarely had these moments, but fortunately, Matt was there when I needed him to keep me on track. He reminded me if I don’t want to do it, just don’t do it. Pack something from home so that we know exactly what’s in it. So that’s what we did and the evening was wonderful.
Reese was off to a wonderful start on her new diet. The first few days, her seizures stopped. It was very encouraging. Actually, it was incredible. The last day of the seizures, we added Vigabatrin, but since it seemed that we were already on the path to reduced seizures, we went off it after a week. A few days later, she had 3 tonic seizures that lasted 30-45 seconds each. After these breakthrough seizures, I emailed our doctor and our dietician. Our doctor had us add back the Vigabatrin, but at half the dose. Our dietician said that perhaps we should try the stricter version of keto. We set up an appointment for a few days later. A couple days after we added the Vigabatrin, she had 2 more seizures during nap time. Coincidentally, the Epidiolex had finally been approved by insurance and we started it that day.
With the new 4:1 ratio, all of our meals are planned by our dietician. While making the meal plan, our dietician asked what kinds of foods Reese ate before. She was surprised how close a lot of the meals I had given Reese were to the 4:1 ratio. Not bad for a rookie – I admit that I was quite pleased with myself.
While both have (for Reese, at least) a maximum of 10 grams of carbs per day, on the 4:1 diet, the portions are smaller. With the Modified Atkins Diet, proteins aren’t limited like they are with 4:1. Cream (or another source of fat – cream has been our go-to) is offered and encouraged at each meal, but everything is a lot more relaxed.
Now, with 4:1, we measure everything down to the gram (or even hundredth of a gram). Each meal is 4:1 on its own, and we use spatulas to get every last bite. It’s hard when Reese asks for more food and we have to tell her no. It’s not hard for me as much anymore, but I can tell it’s still hard on family members. I can give Reese 1-2 snacks per day (we use KetoCal, a prescription only Pediasure-like drink, because Reese likes it and also because it’s 4:1 on its own so it’s easy). But if she gets hungry not long before a meal time, I have found that I have to tell her no. If she’s full going into a meal, she won’t eat all of her food, which isn’t okay. She’ll just eat the small amount of carbs and maybe a little of the other food. And then I have to basically force feed her, which just isn’t fun for anybody.
Since I’m a little OCD about things, when we were doing the MAD diet, I think we were closer to the 4:1 ratio anyway, so the switch hasn’t been very different for us so far, except that some of the quantities changed slightly.
The kids have been stuck indoors for over a month. Among other medicines, Reese is currently on ACTH. She’s been taking it since we were in the hospital and she has started to taper off of it. It wipes out Reese’s immune system and, especially since we’re in the middle of flu season, Dr C recommend we stay home as much as possible to avoid germs.
But I noticed that we had a little break in our schedule from all of the doctors appointments and we desperately needed a change of scenery. My parents were going up to their cabin in Tahoe, so we decided on a whim to join them for a few days. Reese had been on the keto diet for just over 2 weeks, but we’re always up for a challenge!
To plan for this impromptu trip, being on quarantine helped things out – I knew all meals would be at home. And the cabin was a familiar place so I knew what we’d have when we arrived, where nearby stores were, and what items they carried if we ran out of anything. So I wasn’t overly anxious about being away from home, although this was our first time since starting the keto diet.
I packed Reese’s usual foods, our trusty gram scale, and all of Reese’s medicine (plus a few extra days worth of everything – you just never know!).
It had been snowing a lot in Tahoe and one day we decided just to go for a drive. We headed up and around the lake towards Reno. Without having a specific plan, I packed a lunch for Reese just in case. Pepperoni is simple because it travels well and doesn’t need cutlery. Reese had cheese, bell peppers, and heavy cream to go with it.
I’m glad we packed a lunch, because we ended up finding a quiet diner and asked the hostess to seat us in the corner away from everyone else. We ordered our food while Reese happily ate hers. We had the sweetest waitress who saw the two kids trying their best to behave and brought them a side of french fries. Such a kind gesture, but of course, not on the keto diet. So as not to look unappreciative, my dad happily ate the fries. Our first restaurant experience was completely fine – no complaints about bringing our own food for Reese.
I had planned to leave on Thursday, but it was just so relaxing up in the mountains and our cars were snowed in. So we decided to stay another day. I knew bringing extra meds would be a wise idea. Always be prepared, right?
Driving home was a breeze, and I had my ice chest with all of Reese’s foods, so I wasn’t too worried about getting stuck somewhere without food. There is an In-N-Out on the drive home, and I confess I’ve become quite addicted. I’ve been trying to eat lower carb, especially around Reese, so I’m on a serious Flying Dutchman kick. I ordered a plain hamburger patty for Reese. A burger patty from In-N-Out is the only fast food I trust for Reese for the time being.
Our trip to Tahoe – our first time away from home while on the ketogenic diet – was a success. I was a little anxious about the travelling (if we got stuck somehow for an extended period, normal food options aren’t an option for Reese), our first time eating at a restaurant, and being away from the items and routine we were accustomed to at home.
I know there will be bumps in the road on our journey, but we didn’t hit any this time.