Monday, March 4, 2013


Since his illness at the end of January, Trace has had some changes.  He has experienced some atonic seizures, more absence seizures and longer postictal states.  All of these things are probably due to the illness, but didn't get much better after the illness.  It does take Trace a while to get back to his baseline after an illness.  These are some pretty big changes in my eyes and they needed to be addressed sooner rather than later.  Being proactive is our best and only defense against Mito.  So we had an appointment with his epileptologist on 19 Feb 2013.  Dr. V said the changes are most likely due to the illness.  The immediate plan is to increase his AM dose of Onfi.  If the atonic seizures continue, we have the option to remove him from Topamax and put him on a new med designed specifically for atonic seizures.  Messing with seizure medications is always complicated and changing medications can often cause seizures to worsen rather than get better.  The other option, which has been brought up to us before, is Vagus Nerve Stimulation (VNS).  It's an option we are seriously considering now. 

Reason 1 - Trace will most likely never be seizure free on medication alone.  He's had seizures for 4 years now.  And I can honestly say he's never been seizure free.  That is and has always been our ultimate goal. 

Reason 2 - Trace is taking 7 doses of seizure medications per day.  Simply put - that's a lot.  He is on the max dose of two.  The third medication we just upped the AM dose.  We are seeing behavioral and sleep issues since adjusting the medication.  This has happened before with this medication.  If they continue, we will have to decrease the dosage back to where it was before.  We seem to play this yo-yo game a lot.  I really can't imagine adding any more seizure medications.

Reason 3 - The less seizure activity Trace has the better his development gets.  We have seen this happen in the past where we have added or adjusted a med and all of a sudden the "fog lifts" and we get to see more of our boy.  The more seizures, the greater risk of regression. 

There are a lot of other reasons, but these are the top three.  VNS Therapy involves a minimally invasive procedure. Trace's mito specialist, epileptologist and a pedi neurosurgeon will all be working together for his procedure.  VNS is not brain surgery.  The VNS has minimal side effects and the procedure is completely reversible. 

We have time to think about what will be the best decision for Trace.  Dr. V will not schedule the surgery until the summer.  The risk of infection due to all the illness at this time of year is too great for Trace.  So in the meantime we have some thinking to do, prayers to say and will hold on to the hope he will miraculously be seizure free!

Hope, Love, Courage &Faith,

1 comment:

  1. I hope you guys can come to a decision you feel good about and that whatever that may be, that it ends up being wonderful for Trace!