Tuesday, June 10, 2014

And Again! {Owen Update}

Cherry Hill Inn at Swedish
Owen's EEG didn't go quite as well as we had hoped. At our March EEG, he had a lot of background discharge so we went back up to a full dose on his Onfi (we'd cut that in half the month before) and increased his Ketogenic diet ratio. We were hoping that those changes would have improved his brainwaves and they did, during the day. He had a few spikes, but nothing the doctor was overly concerned about. At night was a different matter all together. His discharges were almost continuous all night long a condition the doctor calls electrical status eplilepticus. These are still not "true" seizures, but can be quite damaging. She is still amazed at how well Owen is doing despite everything going on in his brain.
Our next step is to increase his diet ratio to 4:1. We are also going to start VERY slowly weaning off the zonisimide. He has very low levels of it in his blood and it can sometimes interfere with the diet. It also has the most severe long term side effects of all the medications he's been on and he's been on it the longest. Zonisimide doesn't usually help with the type of  brain discharge Owen is having trouble with right now, so we've decided it's best to try to get rid of it. we will go back in for another EEG in about a month and see if things have improved any. If these new changes haven't caused some improvements at the next EEG, we will be adding a high dose of benzodiazepine at bedtime to try to get things under control. Then we will go back for another EEG two weeks after that. If that doesn't work, I have no idea what the next step would be.
Here I was thinking that a 24 hour EEG every 3 months was brutal. Instead we get to go even more often! Owen was not at all happy about being in the hospital this time. He did get to ride the cars around for about an hour while the EEG tech was hooking up another child, so that made him a little bit happy. His favorite volunteer wasn't there this time though and he got a quilt instead of a pillowcase which were both wrong in "The World According to Owen". Maybe by next time it will just be so routine, that he won't be upset.
The hospital did manage to finally get all of his recent lab results. Most everything was good. He had a few things that were just slightly out of range, but not enough to worry about. We will be increasing his carnitor which I was expecting seeing as how we added more fat to his diet (Carnitor helps process fat). He is a little acidiotic, so we have to try to get him to take more baking soda. Amazingly enough he hates eating baking soda, I can't say that I blame him. Otherwise the only "abnormal" lab results were perfectly in line with the ketogenic diet. His glucose, for example, was 58 which would be a problem for anyone else, but is perfectly normal on the diet.
So anyway, wish us luck! I'd really rather not give him a high dose of  benzodiazepine every night, so I'm really hoping the diet change works!

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