I love Ted’s graph! A year ago at this time we were in the worst place for Nora, through October and November until we started trying the Modified Atkins Diet in December of 2011. We are so thankful that everything fell into place as it did: Dr. Wray joined Doerbecher Pediatric Neurology and started the ketogenic diet program (which was almost non-existant before then) just when Nora decisively failed her 2nd drug trial (first Keppra, then Depokote).
Dr. Wray was clearly delighted with Nora’s progress. When we discussed the “what if” scenarios of either a return of seizures or when she should be weaned off the diet, he said, “at this point, I’m learning about the diet from Nora. She’s teaching me.” He has never had a patient with myoclonic seizures that is doing as well with physical and cognitive development, and she is probably responding to the diet better than any other patient he has had on the diet. Nora is a mystery and we can only wait and see what unfolds for her. We can only be thankful that we are on the good side of this mystery.
And although she is only 4, he offered to relax her ratio if and when she is having trouble with compliance. With her great seizure control so far, he said that the ratio can be an open conversation between Nora and the rest of us. She’s happy, so I have no need to experiment to see what happens. As long as we can keep her happy and healthy on the diet, I’m happy keeping the 2 year clock ticking.
He was also pragmatic about when we start counting the 2 years. He said that she was responding to the Modified Atkins Diet last December, so he would potentially start counting from last December, even though she wasn’t seizure free until mid-April.
I have been very pleased with Dr. Wray’s pragmatic approach. We are all on the same team. But Ted and I are going to be extremely conservative on this. As long as Nora is happy and seizure free, I expect her to be in the diet at 3.5:1 until April 2014. If we have some indication that we can stop earlier or start reducing the ratio, all the better. If Nora gets ill or unhappy with the diet, we can reduce her ratio and see what happens. If she has a breakthrough seizure, we can hold the course or increase to 4:1. Decent drugs are still on the table if necessary. It’s good to know that we have somewhere to go. We have options.
After the Charlie Foundation Symposium, I came home wanting to know the underlying cause of Nora’s epilepsy even more strongly. If we know the cause, it will tell us something about why the diet is working for her and whether she is likely to develop out of it in 2 years. If we knew that the cause is something that she won’t grow out of for a long time, or ever, we can prepare ourselves and avoid the trauma of trying to go off the diet and finding out that she needs to stay on. So we will keep looking and learning. Until then, we are thankful for our good fortune of trying the diet early and keeping our fabulously unique, sharp and creative Nora.
I’m glad that Ted talked about advocacy, because now that Nora is out of crisis mode we are moving into advocate mode. I’m so glad that we started this blog, after so much encouragement from friends and family. At Nora’s last appointment with Dr. Wray, we also proposed starting a parent support group at Doernbecher Children’s Hospital in Portland. We’ve heard that this is the only keto diet program between Seattle and San Francisco, and there is no parent-to-parent support system. We felt alone when we started, but this is so much easier if we share the burden. We can reduce the start-up burden of the diet and help parents quickly surmount the learning curve, so they can move from difficult-diet-with seizures-mode into tedious-diet-routine-reduced-seizures-mode. It’s high investment, high reward if it works: saving your kid’s brain.
At the Charlie Foundation Symposium, there was a paper by Claire Chee, RN, at the Children’s Hospital of Philadelphia. We need our wonderful pediatric neurologists and dietitians on our team, but as Ms. Chee said: “We are the ‘professionals;’ parents are the ‘experts.'” We have the deepest gratitude to all of the other keto parents who have commented on our blog, giving us encouragement. Thanks for being on our team too. And thanks for including us on your team. We are here for you.