The Amazing Owen Higgins
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Part 1: Seizures suck and the sequel to that is: Seizure meds suck! That says it all! Oh how badly I wish there were more people all over the United States like Cayman's Naturopathic Doctor (Greg Saunders). Without him I know Cayman would be on seizure medication too. I wish more doctors had the knowledge that Dr. Saunders does. We need more people like him in this world so fewer kids have to go through this awfulness of seizures and the medication's side effects. I sure hope the weaning can be quick and smooth so Owen can get back to feeling more like himself.
Comment By Kristen At 2/17/2010 10:30 PM
I wanted to let you know that Kadyn is on Zonegran. It helped him a lot, went from a seizure every 2 weeks to once a month. He is now on the Ketogenic diet...we will see how that works :)
Comment By Sara At 2/18/2010 3:01 AM

Original Entry:
Seizure Meds Suck
So, at the hospital they told me that we should discontinue the Trileptal and start the Zonisamide (generic for Zonegran).  I asked a few times, of a few different people and they all told me the same thing.  But I was still skeptical, you don't generally stop one seizure med cold, you wean them off slowly and slowly bring another one on board.  So, not wanting to take any chances I stopped the Trileptal in case there was some kind of possible interaction that they were worried about - but I also put in a call to the neurologist just to cover all the bases.  The seizure was on Monday.  I didn't hear back from the neurologist on Tuesday, which was unusual because they are usually very good about getting back to us.  And I figured that because I had specifically said that I had discontinued the Trileptal in the message, that they would be quick to call back if that was a problem. 

Not so.  They finally called us back this morning (Wednesday) at 10:25 am and said that no, we should NOT discontinue the Trileptal, that Dr. Wilson had intended him to take BOTH medicines in combination.  The nurse seemed shocked that I had stopped the Trileptal.  I will not go against my instincts again. 

So, the Trileptal has made Owen very sleepy during his time on it.  So much so that we have stayed up to 10:30 every night to give it to him so that he could take it at 11:30 during the day and not fall asleep during school or therapy. We'd have just enough time to get lunch into him before he'd clock out.  The Zonisamide did the exact opposite - he's been wide awake, unable to take his nap or go to sleep until late, and just wound up like a top all day.  He just couldn't calm down.  Today with both meds on board he seemed confused - not sure if he should be tired or wired.  Hopefully that will settle down over the next few days.

Owen is still rather wobbly - he has a bit of difficulty in coordinating grabbing for objects that he wants and can't balance enough to stand up or sit for very long.  It's hard to know how much is because of the meds and how much is because it always takes a few days after a big seizure to find his equilibrium.  He is happy enough though, and he's enjoying all the extra snuggle time that he's getting.  We'll just see over the next few days how things settle out.  In the meantime he is still quite capable of crawling over to his toy baskets and emptying them all over the living room room a few times a day and eating more than his sister at a meal so he's doing all right.
 
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