Anna

Diastat is the only other medication that we use at present. We resisted using it until May of 2002, but Anna began having a type of seizure which builds in intensity like ocean waves which get stronger with each new wave, and Diastat is all that stands between us and the ER (we’ve nicknamed these events “Superseizures”.) We give Anna a 5 mg. dose shortly (5-10 minutes) after the seizure starts and a second one (rarely) 5-10 minutes or so after the first dose, if necessary. Giving the dose fairly quickly after a seizure starts seems to be the key to how effective it will be in stopping the progression of the seizure. The real trick for us is telling if it’s a Superseizure or a run-of-the-mill Grand Mal-tonic/clonic type of seizure (our usual tip-off is if she makes a gagging sound.) Diastat quickly loses effectiveness if used very often, so we only use it when absolutely necessary. I’ve noticed on this LISTSERV that there is a wide variance among the dosages (from 2.5 to 10 mg) taken by our girls; Anna weighs 71 lbs. and her dose is low (especially when her age and weight is factored in) compared what some neuros prescribe. Diastat was developed to minimize the respiratory impairment caused by Valium which was one of the status intervention drugs-of-choice before the development of Diastat and Ativan/Lorazepam, so it’s fairly safe.

Extensive FDA information about Zonegran, Diastat, and almost every other med can be found at this link: http://www.fda.gov/cder/consumerinfo/DEFAULT.HTM

RD (father of Anna, 12)

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