Week 2 Med Transition To Clobazam

Week 2 Med Transition To Clobazam

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….

By | 2010-10-04T12:32:34+00:00 October 4th, 2010|Categories: Epilepsy, Medical / Therapies, Therapies|Tags: , , , , |5 Comments

About the Author:

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate.

5 Comments

  1. rhemashope October 4, 2010 at 7:20 pm - Reply

    oh, how your post resonates me. we have been through the meds rigamarole for years — depakote, keppra (aka kepp-rage), lamictal… none of them worked. now my daughter rhema is on high-dose valium. i know and understand the heartache of watching your child be altered by these drugs… and the questions, the wondering about side effects.

    hoping with you that this is the “magic med” for your J.

    nice to connect with another LKS mom…

    • Gina
      Gina October 5, 2010 at 12:44 am - Reply

      @RhemasHope ~ Yes, it would seem there aren’t many of us LKS moms out there, and yet, there are. Valium was horrible for us. “The Summer of the Drooling Zombie” is how we recall that particular time. The meds and how they interact with each child differently is mind-boggling. I hope it works for you. Right now….well…it’s not as bad as that summer… but it’s not great either.

  2. Secret Mom thoughts October 6, 2010 at 11:52 am - Reply

    Hoping the magic med works.

    • Gina
      Gina October 6, 2010 at 11:36 pm - Reply

      @Secret Mom Thoughts~ Honestly, I have *no* idea what to think of them now. At least I know to hold my opinions for another 2 months before I scream, “what the ^*&(*(&_) did I just give my son!” LOL (or not laughing, I can’t decide).

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