This, too, shall pass

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give her last week while in the hospital.  We are trying to give this drug a chance, get her to a therapeutic level and then judge, but my gut says to jump ship.  I know part of that feeling is out of fear and the complete loss of control we have found ourselves in.  The other part of me believes whether it is now or a month from now, Zonisamide is not going to be her saving grace.

So here we are, here she is in this situation, and here I am back to my middle of the night posts and waking up to alarms and seizures.  I am angry and sad.  This is NOT what I want for my two-year-old, this is NO way to live, this HAS to stop.  But how?  Where is the magic?  Where is the cure?

I am doing my best to not play the "what if" game, to not analyze our decisions with a microscope.  I am telling myself that this would have been the outcome regardless of stopping Sabril, that this was all in the plan because we are in the dreaded toddler years of CDKL5.  That we are not responsible for her current situation.  I do not know if this is 100% true, but I also do not know that it is not.  I know I should try and be open minded.  As her doctor reminded me last week, we are running out of options, so I really want (need) this medication to work.

I am so beyond broken for little bear.  This is absolutely horrific to experience as a parent.  I am hopeful that we will eventually get her seizures under some sort of control, until then, the message I received in my bath bomb before bed is going to be what I make my brain focus on every time I close my eyes.

Uncertainty...

It has taken about two weeks and endless hours of multiple people's lives (that no one will get back), but we are finally going to be able to give Sonzee her first dose of her new seizure medication, Zonisamide tonight.  While we try not to do too many changes at once, it is always inevitable that certain things will overlap and in this case it is all medication based, so hopefully things won't go completely wonky.

In a sense the comical insurance ordeal played out in our favor as it gave us time to do a slower wean of her Sabril and as of yesterday she was given her last dose of gabapentin.  I am unsure when the build up of these drugs will fully be out of her system, or for Sabril to be at the current dosing level, but these times are always a bit nerve wracking for us.  The gabapentin we are 100% sure did nothing for her in any area so I am just looking forward to seeing what, if any, side effects she might have been having that we didn't really notice but are now will no longer be bothering her (i.e. Dizziness, blurred vision, headaches, etc.).  As far as Sabril goes, it is not an effective treatment for her current seizure type (I call it the seizure variety platter as it displays itself in various forms over a 5-7 minute time period), but we are unsure if it is still keeping the nasty spasms at bay and responsible for her EEG background being clean.  To say we are petrified about being off that medication is quite an understatement, but we also do not want her on more than two seizure medications at a time and keppra is effective at keeping another form of her seizures away, so it is what it is.  

It is always trial and error, and sadly it is Sonzee who has to be the house Guinea pig.  At this point I am eager to see how she reacts to the zonisamide and am hopeful it will treat her current seizure activity.  I just pray (as usual) that the changes we are making just make tiny ripples in the water, that we don't rock the boat too much, and most importantly that is does not capsize.

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