Wednesday, April 4, 2012


I'm happy to report we are seeing some good things from Onfi!!  Onfi is a medication which was just released by the FDA October 2011 to treat seizures.   When we last visited our neurologist/epileptogist in March I had expressed my worry about Trace's neurological prognosis.  After a long discussion, Dr. V decided to put Trace on Onfi and titer off of Klonopin and then Topamax.  End result being Trace on Keppra & Onfi to treat seizures and to see better neurological progress.

The good results - We have seen an improvement in Trace's speech development and even some improvement in his physical abilities.  Trace is really babbling - something he's never done before.  Trace said his first two word combination a few weeks ago!  It was Oh No.  I was so proud to finally see him achieve such a huge milestone!  He also said his second two word combination a week ago.  It was Oh Sh*t.  I know I shouldn't be so proud of this one - but I am!  It may not be the best choice of words - but it is two different words together.  It's my fault, yes he repeated me.  Trace thought it was the most hilarious thing ever and cracked up after saying it each time.  This was again my fault.  Probably because I made such a big deal out of it first gasping and telling him no; but then laughing because you just can't help but laugh when Trace does, his giggles are contagious.  Another good result has been a decline in myoclonic seizures!  We had one really bad night with them where he was up from 1:00 - 2:00 AM seizing.  Not so bad in the big picture though.  Once again the fog has lifted and I see the glimmer in my little boy's eyes shining so bright! 

The not so good results - I have noticed an increase in absence seizures :-(  It has also affected his sleep.  His behavior isn't exactly wonderful, but I don't really care.  I can deal with that.  The positive effects of the medication outweigh aggressive behavior any day.

So after discussing all of the above (plus a little more) with Dr. V here is the new plan:  up the dosage of Onfi (double, 3x/day), keep him on Topamax and double his dosage of Melatonin.  Of course I would have loved to hear leave Trace on his current dose of Onfi and titer off of Topamax - but we can't have everything :-)  I'm just happy to hear his beautiful voice more and more. 

I'll leave you to enjoy one of my most recent & best memories  . . .

. . .Trace & Hudson.  Fearless, Crazy, Little Boys!

Hope, Love, Courage &Faith, 

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