Saturday, September 14, 2013


 Owen had his first Tonic-clonic seizure since starting the ketogenic diet Thursday night. Owen has several different types of seizures. Some of them are very hard to detect unless he is actually having an EEG. The tonic-clonics are the ones we generally refer to as "big" seizures. We are pretty sure he had one of his small tonic seizures about 3 days after we arrived home from the hospital after our diet admission and another about 3 days after we increased his ratio from 2:1 to 3:1. We are positive that he hasn't had a tonic-clonic  on the diet up until now.

 Pre-diet, the TC's had been occurring every 6 -10 weeks, so Rod and I had been on alert the last couple of weeks (we're 8 weeks into the diet now). Sunday we attended a birthday party. I made a special Keto chocolate cake for Owen to have when the other kids were having birthday cake. He was thrilled with it! He tried a couple of times to grab a potato chip, but Rod and I were pretty sure he hadn't eaten any.
 The next day Owen colored all over himself with marker (markers have glycerin and/or alcohol which break down into carbs). We didn't notice since he drew on his belly under his shirt, so he didn't get washed up right away. Monday and Tuesday his ketones were low and we started worrying. I put in a call to his doctor to ask what to watch for and how long we could expect his ketones to remain low after a diet mishap.  Wednesday and Thursday his ketones were back up to optimum levels and we started to relax a little.
 Then Thursday night at 10:52 he had a seizure. It might not have had anything to do with the low ketones. It might just be that the diet is only going to help his seizures not eliminate them, but the low ketones are a very likely culprit. Any change can also cause seizures even if the change ends up being good in the long run.
 The good news is that the seizure only lasted ONE MINUTE!! It ended on it's own without any rescue meds needed. That is amazing news for Owen. There is only one other time Owen has had a tonic-clonic seizure this short that wasn't part of a cluster of several seizures within an hour or two. Obviously, we'd love to have the diet completely control Owen's seizures, but one short seizure every two months would still be such a huge reduction. It feels like we are working so hard with the diet to still have seizures, but we've already had amazing improvement.
 We meet with the keto team on Monday for Owen's regularly scheduled follow up, so we will talk strategy then. Hopefully we can get the diet working 100%!


  1. I love his t-shirt! Glad the seizure wasn't real bad! Poor guy

    1. I'm really hoping for no seizures on the diet, but extremely reduced ones will still be a success. He didn't seem to have the usual after effects with the short one this time which is good too.

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