Wednesday, February 12, 2014

Neurology Update {Ketogenic Diet}

Owen had his follow ups with our Neurologist and Dietician today. As usual, I brought the camera, but left it in the van, so you get cute kitty pictures instead of cute kid pictures. Not that pictures of the kids at the doctor's office would have been cute since all three of the children we brought with us were, shall we say, NOT on their best behavior today. But we have news! Most of it good news!
Owen's labs were good. He is a little low on Carnitine so we are increasing his Carnitor from 4ml to 5 ml twice a day. He weighed 39lbs. a seven pound increase in the 6 months on the diet. His ketones were a little lower than we would like, but he was just getting over being sick and with his carnitine being low along with the weight gain, our dietician wants to wait a bit before changing ratios. We might move to a 3.25:1 or a 3.5:1 in the next few months though.
The Neurologist wants to do another video EEG to see how things are looking from a sub clinical point since Owen had a lot of unnoticeable seizure activity at his last VEEG. We've still had no noticeable seizures since 10/27/13. We have the VEEG scheduled for March 19th only 24 hrs (not 6 days) this time.
Now, the really good news! Owen has had no seizures even though he is outgrowing his med doses. His Lamotrigine and Zonisimide are both at the low end of therapeutic levels. The last time his levels were in this range we were having big seizures multiple times a month and little ones almost constantly. AND, we are going to start decreasing his Onfi! We will cut his dose in half for the next two months and if everything goes alright, we will stop it all together after that. I also had to renew our prescription for Owen's break through meds, because they've EXPIRED! I have expired Diazepam! A year ago, we were getting special permission to use more than the recommended doses in a month and now they've expired.
I'm going to bed early tonight. It seems amazing that 2hrs and 15 min of Doctor's appointments that actually only took about 1 1/2 hrs can mean being gone from home for 10 hours. We left the house at about 9:30 for a 12:45 apt. I like to leave 3 hours early in case of traffic and potty stops, plus I needed to put gas in the van. We ended up making two potty stops, both at rest areas. Both times Owen needed to go, we were withing 3 miles of a rest stop, YAY! We actually made it to our apointment 15 minutes early, although parking the van was especially difficult this time, so Rod dropped Owen, Morgan and I off and spent the next 25 minutes finding a parking space the van would fit in.
We made a trip to Toys R Us on the way home so the kids could use their Christmas gift cards, stopped once for food and a potty trip, plus once for gas and a potty trip, plus 2 more times to use the potty and finally made it home at 7:30. Then I had to unpack everything and clean up Brenna's carsick clothes. I'm wiped out. Hopefully Owen will go to sleep nicely tonight, he didn't fall asleep until after midnight last night.


1 comment:

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