Monday, July 11, 2016

What to do...

Sometimes I feel like I am stuck in the movie Groundhog Day with Bill Murray, reliving the same situations and having to answer the same questions and hoping if we do it correctly we can wake up to a new beginning.  Well, today Sonzee is 17 months old and after 16 months of making decisions, we clearly haven't picked the magic solution because here we find ourselves again with the pro and con list out weighing our options and figuring out the best course of action in terms of the best medication for the bear.

Sonzee's seizures are picking up.  We are up to about two to three a day.  They are lasting around 3-5 minutes.  We still debate on administering her rescue medication for a multitude of reasons that would probably be better off saving for its own post.  Afterwards she sometimes sleeps it off and then is in better spirits when she wakes up.  The seizures aren't currently interfering too much with her every day activities so we have just been riding this out, hoping they go away on their own.  (To this, I would insert the emoji who is contemplating things with the hand up to its face because I really should know better by now).  I have figured out that Sonzee knows when a seizure is on the way (we assume she gets an aura) because she has a distinct whimper that occurs anywhere from 5-15 minutes prior and always goes away once the seizure comes.  I wish I were as good at pinpointing the triggers.

So here we are again, with things coming full circle and us left to decide what to do.  Our antiepileptic drug options are down to two out of eleven.  Neither of which Sam or I really want to try, but they are the best of "all evils".  One medication Lamotrigine (Lamictal) (you can read all the fun this drug brings here), takes approximately 4 months to reach a therapeutic dose and can have a side effect of a deadly rash, BUT if the drug works, it is supposedly amazing.  The other option is Vigabitrin (Sabril), which can cause blindness.  Both of the side effects mentioned are extremely rare, and with close monitoring, can be caught early on.  Then again, the odds of Sonzee being born with a mutation on her CDKL5 gene were also rare.  Both of these drugs have been/are being taken by at least one other child with CDKL5 who have not had a negative reaction.

We know Keppra does absolutely nothing for little bear, and there is really no reason to keep her on something that isn't helping, but with the side effect of irritability, so benign in comparison, it is really scary to make a switch.  What if we just let her go medication free?  Well Sam was a huge advocate of this before she started to have seizures again, and me, well the though of her being without any type of seizure medication is extremely scary and something that I am unable to handle psychologically.  The one thing we both agree on currently is that she does need some sort of medication, one that won't impact her personality (too much) or hinder her development.  We could rely solely on the CBD oil, but that would need to show us a little bit more control for us to put all our eggs in that basket.

I wish there was a blinking sign indicating "THIS IS THE BEST CHOICE".  I wish there would be a sign indicating an answer that would not leave my stomach in knots and the thoughts in my mind running in circles.  However, what I have learned is that will never be the case, so we will just have to "make the best decision based on the information we are given".  Fantastic.

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