Wednesday, January 10, 2018


For the past couple of months we have been slowly weaning Sonzee from one of her medications in between increasing a new one.  The one we are weaning is the highly addictive benzodiazapine medication, Clobazam (also known as Onfi).  It was one of those medications on the "I would never give my child that medicine ever" list, but then life happened.  She has been on the medication since August and while she thankfully never experienced any of the severe respiratory distress issues that she could have, her seizures sadly never abated either.  Instead of waiting for her new medication to be at the highest therapeutic dose to wean her more consistently, it was decided after her most recent palliative care visit in December that we would focus on only weaning the onfi and not increasing the new medication. 

About 2 weeks ago we noticed Sonzee started to act more lethargic and just not quite herself.  We thought maybe it was effects from the wean so we held off on her wean for a week.  We waited to see if she was getting sick.  We attributed it to any possible excuse we could fathom, nothing gave us clarity yet nothing was improving either.  After this weekend we decided to contact her doctor and get some lab work, surely that would shine some light onto the situation.  The results came back with nothing significantly out of normal ranges, we have no better insight into what could possibly be going on in her little body. 

I used to think that we could be on top of the situation, one step ahead of any potential danger zone, but I am slowly coming to terms with the fact that maybe that really is not possible.  I hate sitting here feeling less in control of a situation I didn't have any control over to begin with.  No leads to go off of, no place to look at next...just forced to sit and wait for her to look and act healthier but not knowing if that is the direction things will go. 

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