Nora had another tonic clonic in her sleep at 6 am this morning. Grandma Margie had just returned for a visit and was sleeping with her.
On the bright side, it was very short and mild. It’s also a vulnerable time for the brain–the brainwave changes in and out of sleep states in the early morning make seizures more likely. We have other anecdotal evidence of early morning seizures in people on the ketogenic diet, both because of the sensitive sleep state and ketosis is lowest early in the morning. I’m not too terribly worried about it, but it’s always disconcerting to see a seizure.
Nora slept for about another hour after the seizure and had a very mild postictal state also. No more vomiting or sleeping on and off for hours. She seemed a little slower in the morning, not quite bursting with energy as usual, but we took her to gymnastics at 9 and she had a great time. Seems like it will be a normal day. She seemed to have high ketones when we tested her this morning, so hopefully that will protect her from myoclonics returning.
However, when this happened 5 weeks ago she also had a great day-after. Then the myoclonics started again on day 2 and lasted for 2 weeks. Tomorrow will tell whether we are in seizure-land again for awhile. But I hope that this time will be milder and shorter than last time, until this eventually fizzes out for good.
But we are disappointed, particularly because we were counting down to a seizure-free deadline. Last time we saw Dr. Wray, he said that if she stayed seizure-free for 2 more weeks, which would have been Friday, he would probably start weaning her off Depokote. I’m curious to see how this changes his decision on that issue.
In another side-light, Nora’s blood test from last Friday turned out well, except that the HCO3 levels in her blood were low. I’m a little confused on this issue because I received differing information on the phone from the nurse and from the doctor via email. In any case, her blood is a little too acidic, which is somewhat expected on this diet, but if it gets out of control it can lead to a serious illness (metabolic ketoacidosis, as I understand).
We’ve been dancing around the issue all week because we can’t get an appropriate supplement to neutralize the acid. The first one called into the pharmacy was a “delicious grape flavor,” which is code for “CARBS” to me. In fact, it seemed to be carb-free but had sorbitol, a sugar alcohol that interferes with ketosis for some people. We did not give her any of it (and it wasn’t covered by insurance AND it can’t be returned). The doc called in a different formula, but that apparently has been discontinued. We can give her baking soda (dissolved in water or other fluid), but it doesn’t taste good. We will keep working on that issue, but in the meantime she does not seem to have any symptoms of the acidic blood issue and the doctor says it is highly unlikely that was related to the seizure this morning.
Updates to follow as this dance continues. Never know what the DJ will be cranking out next.
Thanks for your visit to my blog and for leaving a comment!
For what it’s worth, we were not able to achieve full seizure control for Jade until we removed all her anti-seizure meds, including Depakote. In the end, it took almost 18 months, and going all the way up to a 5:1 ratio (which we had to soften at one point because her liver couldn’t handle it) before we finally achieved full seizure control. Now we’re back down to 4:1 and Jade’s been seizure-free for almost 23 months.
I’ve only read this one post so far, but will be browsing around some more soon. It’s always nice to meet a fellow keto-mom. I am sending my best wishes to you and to Nora!
Nora has such a great team supporting her, you guys are doing such a good job. Sending lots of love and prayers.
Thanks Fawn. I’m so glad that Jade is now seizure-free. I think I missed the dates on the posts that I read, but I could certainly relate. A 5:1 ratio is pretty extreme, and I’m glad that she was able to back-off the ratio and stay seizure free. Well done, you give us hope.
Sorry you had this small set back. Hopefully it won’t repeat the previous pattern and as an isolated event. Yes, I am the queen of praying for isolated events! We are seizure free for 12 weeks today…and my little guys is just totally sick of eggs so that has me doing a bit of a dance trying to find fillers to fit his diet for the loss of eggs. I hope after not having them for a few days he will be interested in them again.
Yay for 12 weeks seizure free! Good for you! We often go back and forth among favorite foods too. We had to take a break from eggs, but our baked-eggs recipe got Nora interested in them again. She calls that recipe her “delicious eggs.”