Nora slept well on Sunday night. I slept with her again to keep a closer “ear” on her. She had a few bigger myoclonics in her sleep, which I am sure is still pretty usual for her and no tonic-clonics.
This morning she was her bright and shiny usual self. When Laura came to take care of her for the day, Nora became a mermaid and insisted on hopping around the house on her tail (rejecting Laura’s clever suggestion that she is a magic mermaid that gets legs on land).
There are also a few good suspects, or a confluence of factors, that probably explain this seizure. On the top of my list is the brownies I made for her on Saturday and their caffeine content. Although she got a small amount of caffeine in absolute terms (maybe 10 mg), it is probably 4 to 8 times more caffeine than she is accustomed to. Caffeine is a known seizure trigger for some people and she was sleeping restlessly, although she has had restless nights with a seizure in the past so it is impossible to know the causal connections.
We are fairly sure that she is still strongly in ketosis after we tested her urine on Sunday morning. I don’t think that she ate anything that we didn’t know about, although the Atkins diet points out that caffeine can trigger the same insulin response as sugar, so it mimics an increase in blood sugar even in the absence of carbs. I haven’t looked for any other verification on that point, but it is an interesting consideration for someone on this diet.
While we pondered the reality of another seizure yesterday, I’ve come to several conclusions:
- Nora has epilepsy. And she always will. It is likely that she will always have a lower seizure threshold, even if she “grows out” of her strong tendency to have seizures now.
- And we will always worry about her. For many good reasons.
- Even with another tonic-clonic on her record (her last one was 6 months ago, before the myoclonics started), she is still vastly beating the medical benchmark of a 50% reduction in seizures thanks to the diet. I am assuming that the docs will count all seizures equally, because tonic-clonics are a less troubling type of seizure overall. We’ve got our questions in with the doctor now.
Thanks again for all of the support and kind words from our friends. Nora is still our example of resilience and energy.
I saw the article about your family in the newspaper Sunday and decided to check out your blog. Thank you for taking the time to update this blog. We have a 3 year old boy whose epilepsy story is very similar to your daughter’s. His generalized seizures started last year. After a year of being seizures free on Keppra he started having myclonic and absence seizures in March. He is now on Depakote and Keppra. The Depakote helped for awhile but he is now up to having 20-50 seizures a day. We increased his Depakote but it didn’t help much. We could put him on another medication that would make him more drowsy than he already is, or try diet. Your blog has been giving us insight to help us make a decision. Hope things continue to go well for your little girl.
Hi Amanda–Are you in Corvallis or Albany? The thing that I really wanted to stress in the article is that I want to start a support group to help parents understand the parent experience of doing the diet and help with the learning curve. I would love to talk more with you and I’m happy to answer any questions that you have. If it’s ok, I will email you directly.
Christy
I would love that. I was wondering if there was a support group around here. This experience is really hard and it would be great to have others to talk to. Feel free to email me and as we prepare to get started on the diet I might have a lot of questions to ask you. Thank you!!
Great–email on the way!