--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "Missy T"
<missyat2001@...> wrote:
>
> Dearest Sue,
>
> Kevin just started that med 3 days ago, did you get it from Mark's
> Marine Pharmacy? That is where it originated from.
>
> Clobazam/Frisium is in the benzo meds... FDA had decided that the
USA
> has enough of the benzo's so they will not approve it (yet).
>
> So far Kevin is just tired but again he has been on it only 3 days
at
> 2.5 mg in the AM only. Kevin is also dropping everything, and still
> having head jerks and arm jerks at a rate of 15 per day. He just
> dropped his meds on the kitchen floor this morning??!!
>
> We are from Spokane and RAN to Seattle for a better dr. I fired
> Kevin's old neuro after he declared Kevin cured (what parent would
not
> want to hear those words?) BUT Kevin had just had a series of head
> drops and that stupid neuro even pointed it out during a VEEG!! Then
> had the gall to tell me that those were not seizures because he can
> not find them on the VEEG (He didn't push the silly button!!)
>
> We really like Children's in Seattle and the whole staff has always
> been looking out for Kevin... there have been sometimes that I have
> gotten on the phone and yelled at them for pooh poohing me. They
> learned right away that we are 4 hours away and when I call it is
> usually urgent.
>
> Missy
>

you travel 4 HOURS!!!! just to see a doctor for Kevin? That's love
there. I have a hard enough time just getting across the water to my
doctor app. but going that far means you really what something for
him. I really respect that!