Saturday, September 21, 2013

Owen Update!

Old pictures from when we thought Owen would start sleeping in the boys room soon.
 Owen had another small seizure this week. Only 30 seconds long, but I was really hoping to not have ANY seizures on the diet. We just started him on Carnitor which helps process fats. That usually helps increase ketosis although his ketone tests have still been in normal range. Starting another new supplement might have been a factor in causing the seizure.

  He's been  having a horrible time sleeping! I strongly suspect that the change in metabolism from the diet is affecting how his body processes his medications. The doctors plan to wait until just before his next visit in November to test his medication blood levels though. Owen has been waking up multiple times in the middle of the night screaming. He's also been waking up asking for food. we're hoping that increasing calories at his bedtime snack will help with that. He hasn't been falling asleep until 11:00 or 12:00 and then often wakes up at 7:00 crying about being hungry. This is especially problematic because one surefire seizure trigger we have found for Owen is lack of sleep.
 Owen's current medication and supplement schedule is:
 Morning:
     1200 IU vitamin D (Carlson drops)
     Carnitor 1mg (upping to 2 mg in the next week)
     80 mg Lamotrigine (4 pills total)
     1/4 t calcium carbonate
 Afternoon:
     250 mg K Phos neutral (can't be taken with calcium or iron)
Bedtime:
     1/4 t calcium carbonate
     1/4 t baking soda
     Carnitor 1mg
     80 mg Lamotrigine
     175 mg Zonisimide ( 4 capsules opened up and mixed into food)
     5mg Onfi
     1/2 Centrum adult multi-vitamin (crushed and mixed into his food)

Then we also have Mirilax (prescription)we can give him for constipation, but I'm trying to control that with diet first. Tylenol suppositories(prescription) and adult Ibuprofen (3/4 tablet crushed in food) in case of fever or pain, and Diazepam and Ativan in case of breakthrough seizures.
 We actually told the poor little guy that he might get rid of some of his medications if he follows the diet. Instead we've just added in a whole ton of supplements so far. I'm still trying to figure out a good way to organize all this so I don't forget anything AND everything is out of sight/reach of the little ones. I actually have no concerns whatsoever about Owen taking anything when he's not supposed to, he's so sick of taking medicine. Brenna is a different story though. She feels totally left out when it comes time to take meds. We do give her vitamin D and a multi, but she would gladly take his too I think. A lock box is pretty necessary, but then I find I forget to give him some of the supplements. The K Phos neutral especially since it can't be taken with any of the other stuff. I'm trying to come up with a wipe off chart or something, but I haven't totally figured it out yet.


3 comments:

  1. Just reading up on your story about your Owen. Have you thought about using an app to keep track so that you could put in reminder alarms, ect? It has been very helpful for our family this past few months!

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    Replies
    1. I don't actually have a smart phone, I'm still using my old flip. It does have alarm feature, but it doesn't have room to tell me what meds are needed, just 9:00 meds. Otherwise that would be a great idea.

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