We are happy to report another milestone in Nora’s diet therapy success: 14 weeks seizure-free–over 3 months! And even better, one week Depakote-free!
She had her last dose of Depakote last Tuesday night, July 24. Since then we have continued with the same bedtime snack and ritual, minus the Depakote “sprinkles.” As we eliminate Depakote, her doctor also wants us to eliminate her carnitine and folic acid supplements; he saw them as combatting the side effects of Depakote, not necessarily the diet itself. She is down from 3 carnitine tablets per day to 1 now, although I think we will keep that one for a while longer, as our supply lasts. Some doctors also use carnitine as a matter of course with the diet itself, and it is a simple dietary supplement that does not have unwanted side effects. We will update the Current Therapy page with the new routine.
Ending her anti-seizure medication mades us anxious, of course. There is extra pressure to be hyper-vigilant with the diet to maintain seizure-freedom. But it also makes me think ahead to the day when we wean her from the diet as well. I imagine even more anxiety and anticipation for all of us, except maybe Nora. She is happy to be done with her “sprinkles” medication, but it’s absence is not a cause of celebration every day now. It’s just the new normal. Just like being seizure-free.
Sometimes Nora says, “I’m going to be on my diet forever.” We also heard this about taking Depakote sprinkles (and cleaning up toys). My strategy is to remind her that it will not be forever, certainly not until the end of her natural life plus all eternity, but it will be for awhile longer. Her four-year-old-self can’t conceive of measures of time like months or years, or all eternity for that matter. After the reminder that it will not be forever, I try to turn the sentiment around for her by emphasizing the good things in her diet, although mentioning seizure-freedom is a little lost on her too. Instead I emphasize the good parts of the diet that she does experience every day, and last week I got confirmation that it works sometimes:
Nora [whining]: I’m going to be on my diet for-EV-er.
Christy: It’s not forever, darling, but it is awhile longer. And just think of all of the good things that you have on your diet. You like your PBJ muffins, right? And cheddar crackers?
Nora: Yeah. Will you still make me PBJ muffins when I’m done with my diet? And cheddar crackers?
Christy: Of course I will. They are really good, aren’t they. I like them too.
Except when she is off the diet, I will not mix the peanut butter down with an equal amount of butter. And I won’t weigh out 5 g portions before baking the cheddar crackers; I will just plop down little blobs of dough on the baking sheet. That will be a good day. And I will share some too.
Very sweet conversation!
Good luck being off the medication and congrats on this huge milestone. She is a lucky girl to have a mom as creative as you are with the recipes. Hoping one day I can make my little guy as happy with his keto choices.
Thanks for the continued inspiration!
Such good news! I am so very proud of you and Ted for all you have been able to do to help Nora have such good results.
Fabulous news Christy! You and Ted have done an amazing job handling this situation!!!
I love this post! Yeah for eliminating a med! That is incredible. Keep on going – you guys have got this!
Thank you for the encouragement. I checked out your blog; good luck to you guys too. Your son is adorable.
Thank you for the encouragement everyone!