more seizure drugs

Travis and I sat with the neurologist yesterday afternoon and came up with a plan for Ryan and his ever-increasing seizures.  Basically the doctor said there are two “last resort” medications we can try and if those don’t work then the only thing left is experimental studies.  There is a new drug out called Onfi that is a long acting benzo we are going to start Ryan on as we taper him off the Tranxene (a short acting benzo).  He’s been addicted to benzos for several years now since we’ve had to give him so much of the drug through daily doses and rescue meds.  If this drug doesn’t work then the last one is Sabril which is the drug that can cause vision loss.  The doctor explained it’s peripheral vision he could lose but in someone like Ryan who will never drive, play sports, etc, he doesn’t need his peripheral vision anyway.  I honestly don’t hold a lot of hope for either drug because he’s already been on fifteen seizure meds and none of them have worked long-term.  But at least it’s something.  I think I just had to come to the point that I accepted – once again – what is going on with Ryan and can move on knowing two things.  One, Ryan is God’s child first and he loves him more than I ever could so who am I to doubt His care, protection and perfect will.  And secondly, Ryan is very loved and has a great life because we continue to do everything we can to give him the best quality of life possibly.  It is what it is.  I have these periods of time when I grieve and feel the loss of control over his seizures and then I get through it and move on.  I guess that is probably perfectly normal.  Thankfully I don’t stay in those seasons for too long!

Travis, Brad and Nathan were off early this morning to meet the rest of the guys heading to Colorado.  It’s a group of ninth graders from church who are hiking, biking and camping until Monday evening.  I’m sure they will have a blast and create lots of wonderful memories.  The other kids and I will be home.

I have to run but wanted to get an update out about Ryan’s appt yesterday.  Off to my mammogram….I’m getting old!

One thought on “more seizure drugs

  1. Hi Dear Friends!!!! It has been too long since I have written in here. But I treasure receiving your updates and pray for you. Hugs and love and prayers for you!!!! Dorine

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