At the end of week 1 of the med change, J was well, I’m not sure what I can say about it. Nothing but lethargic? A seemingly tranquilized 50 pound boy stumbling his way through his days. Running into the washer or dryer trying to make his way to the garage. Running into the wall just trying to get to the TV show he’s been dying to watch. A slow, cumbersome yet determined poke at his sister, swipe at his brother…a swaying on-slot of kisses. Then the stomach flu.
The problem with the stomach flu or an illness at all is that it confounds what you might be seeing or recording about the transition of magic meds. Does he seem to have stomach discomfort because of the side effects of a new medicaiton? Or because he’s on (now) 3 AEDs (anti epileptic drugs)? Or because he has the newest form of stomach flu that’s been running through his school?
Our transition this go ‘round means leaving Valproic Acid and Lamictal. Having begun…well, not begun, I won’t go that far back…but recently starting with the Valproic Acid which didn’t work, the thought was we would switch to Lamictal and wean from the VA. Finally determining that we’d have better luck with the combination, we worked both medications to their max to find that J is still having spike and wave activity…seizure and pre-seizure activity during 50% of his sleep. Still.
The outward indicators of increases of this were abounding. At the very least, we knew / know that the magic meds of recent are not working or he is getting worse…time to move on. Our options are narrowing. Some AED’s work with certain forms of epilepsy but not others. Our most recent choices include Benzel and Clobazam.
Benzel has not yet been shown to be thoroughly effective with LKS or CSWS, but it has with ESES. So, it’s not as appealing. Clobazam has been shown effective with most if not all forms of epilepsy but the degree of effectiveness varies. Used since the 1970‘s throughout Europe, Clobazam is not readily available in the US. Therefore it is not covered by insurance. One pharmacy in New York is permitted by the US Drug Enforcement Agency to dispense the medication on a ‘compassionate basis’. With doctor’s letter of necessity, one can obtain this medication.
That’s the route we had to choose. That’s what we’re transitioning to. The new magic med. We can’t afford it. We aren’t sure where the money will come from and only have hope that if this medication should work for J, we can get a generic through Canada for a fraction of the cost ($250 for 1.5 month supply vs. $30 for the same amount of time with a generic). We’ve opted to go for the ‘real thing’ first to find out if this magic med works.
This new magic med. And we’ll try it. And we’ll hang on to the hope it will be “The Magic Med”. And we will keep doing whatever we have to, to fight this fight alongside J.
We’re officially at 2 weeks….and counting….