Monday, June 2, 2014

Owen Update {Ketogenic Diet}

I haven't posted much about Owen's health lately. The good news is because it's been pretty uneventful. I know I promised to post about our transfer to Swedish and I'm working on that post. I'm having a pretty hard time writing it because we were in such a bad place then. I'm also having issues getting the video to upload nicely, but it will be soon!
May 25th marked the one year anniversary of the last time we called an ambulance! Yes, we celebrate some interesting anniversaries here in Medical Wonderland. May 27th marked 7 months SEIZURE FREE!! To recap things, we hadn't gone longer than 2 months without a tonic clonic (grand mal) seizure before. We were calling ambulances so often that we didn't even have to tell the paramedics Owen's background information. Everyone already knew him. To get to this point is amazing!
The bad news is that while we are now seizure free, we haven't been successful weaning any of Owen's medications. Our recent try at weaning the Onfi was a failure. While he didn't have any true seizures, he had a lot of abnormal brain activity. So we increased back up to his previous dose of Onfi and changed his Ketogenic Diet ratio from 3:1 to 3.5:1. That means that instead of getting 3 grams of fat for every one gram of protein and carbohydrate combined, he now gets 3 1/2 grams of fat for every gram of protein and carb combined. That doesn't sound like a big increase, but it means that he now gets only 4 grams of apple with his pancake instead of 13 and only 13 grams of cheese on his "sandwich" instead of 17. On a very practical note it means that we are back to having near constant food fights. Owen is having a really hard time adjusting to the change and has been refusing his food. He's eating about 3 different meals regularly. That's with getting 5 meals a day. Everything else he throws a fit about.
On Monday, he goes to the hospital for another EEG which will let us know if the abnormal spike patterns have settled down. If not, we will probably be switching ratios again. I'm really hoping that we don't have to do that since I have no clue how I'll get him to eat then. We are going to talk about adding in MCT oil since that can help raise ketones without making dietary changes. It will also give him a few extra calories without having to alter all of his recipes again which will be a good thing since he completely stopped gaining weight about 3 months ago. Of course the lack of weight gain may just mean he's finally leveling off after the pound a month weight gain the first few months on the diet.
So anyway, prayers and/or good wishes would be extremely appreciated right now!


  1. Just out of curiosity, have your tried MCT oil? Or even smelled it? We had to put it in Apollo's tube after his last surgery when he couldn't tolerate the fat-free formula. I cannot even describe how nasty and stomach turning that stuff is. It's hard to imagine actually putting it in your mouth! Poor Owen, such a fighter. In our prayers, always.

  2. Owen is taking 5mls of the MCT oil orally right now. It's pretty gross, but if we change ratios he won't get basically any fruit or veggies which are his favorite. the stuff eats the numbers off the syringe, it's hard to make him eat it. We really don't want to put his feeding tube back in though since he's allergic to it. Plus we wouldn't be able to use the steroid cream to keep the granulation tissue down since it is contraindicated on the diet. he also has bad bruising on the diet, so I'm worried about surgery again.

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