Nora turned 11 in June, which is a lucky birthday because it is her favorite number and the year that witches and wizards get their admissions letter for Hogwarts…still waiting on that! There are many books focused on 11 year olds, so it must be an important transition year in a person’s life. As a future author, Nora pays attention to these things. 11 should be a great year!
Nora is now over 7 years seizure free. Her last seizure was in April 2012. We held steady at a 3.5:1 ratio for 2 years after that, started weaning her from the diet in April 2014, then kept her on MAD until she was about 5 years seizure free. You can see the general progression in Nora’s Epilepsy Story. Now she eats like any other kid, making herself mac-and-cheese and snacking on ice cream. We still try to steer her away from sugar bombs (marshmallows, suckers, etc.) and toward sweets with some fat (chocolate!). She still prefers half-n-half on her breakfast cereal rather than milk, go figure. Now we stress that the most important thing is to keep up a health balanced diet.
One concern that I had about the diet was creating control issues with food. There are 2 ways to worry: first, that she would go wild after she was “off” the diet, or second, that she would be super controlling over food into her future and develop an eating disorder. I am happy to say that I don’t see any of those dynamics playing out.
Nora has amazing self control when it comes to snacks and sweets. On the diet, both she and her brother would use strategies to enjoy a small portion of a treat, like putting ice cream into a small bowl and using a tiny spoon to eat it a bit at a time to really enjoy it. She would eat a square of chocolate so slowly that she would get a very characteristic chocolate streak in the corner of her mouth. She usually still has Halloween candy in her room 6 months later. When we were at the Oregon coast last week, each kid got a bag of 10 saltwater taffy, and Nora still had some in her bag when we got home. She has definitely not gone hog wild, and she does not deny herself treats. One reason that the diet went smoothly was her amazing self control, even when she was so young. We all negotiate our relationship to food throughout our lives, but for now Nora seems to have it down.
Nora has grown so much lately, she is getting tall and is still lean. Next year she will go to middle school, continuing with the dual-immersion program with her Spanish language arts class. She still enjoys theater, deepening her writing and directing interests. She recently created an adaptation of the original Alice in Wonderland story. The “readers theater” version that she performed for us was about 20 minutes (perfect), and she has recruited several friends to play the parts while she directs. They set a performance date in September, and based on the sustained interest among her and her friends, I think it will actually happen! Nora continues to amaze and delight us. We are so thankful for her beautiful healthy brain.
So happy for your family that Nora has been seizure free over 7 years. It’s just truly amazing. Our daughter is 11 as well and has had epilepsy for 3 years. It had been controlled with 1 medication however the side effects started to outweigh the benefits. We have switched medication and there are breakthrough seizures. I was just searching online and came across your blog and am so grateful. My heart just drops when a seizure happens and reading your story has given me so much hope for change. Please can I contact you via email. Thank so much for continuing to write your blog and give us parents hope for our children.
Hi Bily, I’ll send you an email so that we can connect. My heart goes out to you, so sorry that you are on the medication roller coaster again. The diet isn’t a sure thing, but it is helpful and hopeful, and it’s definitely worth a try.
Hi there…I have really enjoyed reading your blog and Nora’s amazing journey! This has given me real hope. Our daughter is 7 and was diagnosed with Doose when she was 5 and a half. We have been on keto since August 2019 and on 2 medications…things have gotten better but seizure freedom has eluded us so far. After 4 days of seizure freedom this past week, she then had a seizure in her sleep after waking up at 3am and coming to our room…we were devastated because we were just beginning to feel hopeful ugh!
Anyway thanks for keeping this blog up…your story gives us real hope for the future!
Hi Chima! We are wishing the best for your daughter and your whole family. Sometimes it takes a long time to get seizure control, so keep up the fight! Getting several days in a row is a great step forward, and a breakthrough seizure is always devastating. But you get back up and keep at it the next day, because every day of seizure freedom is a win. You can do this!
There are a lot of hopeful stories out there, I’m so honored that Nora’s story has given you some hope too. All our best <3