Wednesday, October 9, 2013

Return of Seizures

This update is long overdue but I wanted to make sure to document this turn of events.  In May, we started noticing Callie's right arm twitching periodically.  It just seemed like an involuntary muscle spasm, but after it reoccurred several times over a three week period our fear of seizures quickly returned.  On two occasions she seemed off balance around this time and overall had more falls than usual.  Fortunately, Callie already had her annual checkup scheduled with her neurologist Dr. Pearl at that time, so we were able to see him immediately.  But what was supposed to be a light-hearted appointment marveling over her progress over the last year ended up being a serious discussion of whether or not the twitching was a sign of seizure activity, and if so, what type of seizure and how it should be treated.  Long story short, we ended up completing an EEG which not surprisingly showed nothing (the 1 minute episodes were happening two, maybe three times per week, so obviously unlikely to catch during a 30 minute test).  Our options were to be admitted and hooked up to an EEG until the activity was detected or begin medication without proof.  I trust Dr. Pearl completely and in his opinion these were focal/partial seizures (which are common in PMG kids), so we opted to go ahead and start a med.  We were given the choice of Keppra, Lamictal, or Trileptal.  All have possible unpleasant side effects.  We chose Keppra and seemingly made the right choice because the episodes immediately stopped.  

It was difficult going through this experience in May.  I cried on and off the day I admitted to myself we were probably dealing with seizures again.  And it was tough going through the neurology appointments.  We were there three times in two weeks.  It brought back very painful memories of the beginning of this journey when we were dealing with infantile spasms and her newly diagnosed polymicrogyria.  But I am grateful to have a neurologist we trust and extremely thankful to have immediate success again with a seizure medication.  Please pray it continues to work, as sometimes these meds begin to fail.  If the seizures stay away for two years we can try weaning off medication again.  Since this update is late, its been five months so far.  We are praying and counting down... 1 year and 7 months to go.  


Mel on October 15, 2013 at 10:51 PM said...

Hi there! I'm so sorry to hear about the return of the seizures. I just hate them so much. Luke did really well on Keppra for quite awhile w/ no side effects. Big hugs to you & Callie. Mel


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