It is a big week in Nora’s world, although I’m sure it seems bigger to us than to her.
Yesterday we went to Portland to see Dr. Wray for her ketoclinic checkup. Tomorrow will be her 2-year seizure-free anniversary. It is a big milestone. 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.
That doesn’t seem like great odds to me, but that’s the one-time all-comers study. Every epilepsy, every treatment. 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. On the other hand, we don’t know why it is happening, so there may be some underlying glitch that is not resolved. So maybe we are back at a 60% chance.
Ted and I are the analytical types, so we like some assurances like good probabilities. But we won’t know if her epilepsy is resolved until we try going off the diet, and it is not fair to keep Nora on a treatment that she might not need. So this is the anniversary we have been waiting for. It’s time to try to wean her off the diet!
The Slow Wean Plan
There is no consensus about the exact wean procedure, except for what you should NOT do: an IV of glucose, or a trip to the cotton candy factory, for example. We have had such a good experience and don’t have a rebellion on our hands, so we are choosing the slower-wean route to start. If we stick to this schedule, it will take us about 1 year to get down to a 1:1 ratio and go to a Modified Atkins Diet. We will see what happens after that.
We are going slow to give Nora the best possible chance of successfully coming off the diet, but the down-side is that we will be living with our friend the gram scale for a whole extra year and Nora may not perceive the differences in her diet. But when we look at the schedule for the next 4 months we see the difference.
We will go down on her ratio by 0.25 every 4 weeks. That means that now she gets 3.5 g fat for every 1 g carb + protein. Tomorrow we are changing to 3.25 g fat for every gram carb + protein (3.25:1). In 4 more weeks we will go to 3:1, etc. They will first increase her protein, then after she gets up to her recommended protein intake for her weight they increase the carbs. For example, all at 1350 calories:
4/23-5/24: 3.25:1 ratio, 132 g fat, 23-24 g protein, 17 g carbs
5/25-6/21: 3:1 ratio, 130 g fat, 26 g protein, 17-18 g carbs
6/22-7/19: 2.75:1 ratio, 129 g fat, 26 g protein, 21 g carbs
7/20-8/16: 2.5:1 ratio, 127 g fat, 26 g protein, 25 g carbs
That 25 grams of carbs seems like so much! 2 months after that she would be up to 35 g carbs! See the picture of 1 gram of carb for various fruits, veggies and nuts from the last time we made a diet change. But because it will happen so slowly, I wonder if Nora will really notice the difference and remember what it used to be like. She doesn’t complain about her food, but she wants more freedom of choice, like taking out a snack when she wants to. I will try to give her more of that freedom by keeping more at-ratio snacks around for her to choose from, which I hope is easier with lower ratios.
If all goes well, we can choose to speed up this process. We could go 3 weeks in between steps, or we could jump down by 0.5 on the ratio each time. We will watch and wait.
The “What If” Conversation
We had to ask all of our “what if” questions when we saw Dr. Wray yesterday. We watch and wait. He said that time is the epileptologist’s friend; we will see how she responds to the change over time. The more time that passes, the more information we have. We have to look for patterns. I’m not sure that time is the parents’ friend in this case. We would love some certainty but will have to cope without it.
Nora could have more seizures. If they are a tonic-clonic convulsive seizure, we manage in the moment then wait and see. It might be isolated, so our best strategy will be to wait. She may have more myoclonics. Dr. Wray said that people with a mild myoclonic epilepsy sometimes have a few myoclonics in the morning, but it is not so disruptive that they want an invasive treatment like drugs or diet. Again, we would have to wait and see. We don’t know the cause of Nora’s epilepsy, so we don’t know how this will play out. We only need time to find a pattern and make some decisions. If she develops a pattern of seizures that interferes with her life, we would have the option of diet or drugs again.
The best news is that she is past the window for the devastating degenerative conditions that we all worried about in the beginning. She has developed perfectly, cognitively and neurologically (otherwise) normal, growth on-track, all systems go. That is the comfort and reason to celebrate.
This quote sums up how I feel about it (thanks to keto-mom/friend Fawn for passing it along):
“Nothing is more desirable than to be released from an affliction, but nothing is more frightening than to be divested of a crutch.”