06-01-2003

Regarding Lamictal, our experience with it was a disaster. Anna (11 at the time) was on no other meds except Ativan (lorazepam) on an occasional basis, and had been off daily drugs for some time, but we determined that some intervention was necessary as her tonic/clonic and other seizures had become daily events. We and our neuro agreed that Lamictal was an obvious drug to try.

We started with a small dose (we're on vacation right now so I don't have our old notes/logs with me, but I think it was 25mg), and there seemed to be some benefit the first few days, so we went to a second daily dose after a week and everything went crazy - Anna began bouncing off the walls, not sleeping, and her heart began pounding like she had run a marathon. Her recovery time after seizures seemed to be better, so we and the neuro decided to observe her a little longer before changing anything, but then we noticed that she seemed to be losing weight rapidly, and we were hearing her heart "squeaking"!

The neuro referred us to a ped heart specialist immediately, who did several tests and determined that Anna had Mitral Valve Prolapse, a common heart problem which requires that she get a massive dose of antibiotics before having any dental work done. This was a new problem, and her regular ped confirmed that all of the odd heart sounds and the valve prolapse had never manifested before the Lamictal was started. Her body weight was also down by 10% and she was now clinically anorexic, and we had to start treatment for that. With all of this information, we and the neuro decided to drop the Lamictal imediately - she had been on it less than a month.

We started Topomax soon afterwards, but the weight problem continued to get worse, so we eventually stopped that also (weight loss is an almost universal side effect of Topomax, and it may eventually be marketed as a weight loss treatment.)

Anna is on Zonegran now, which is working pretty well, and we use a 5 or 10 mg Diastat as needed to interrupt the long seizures.

RD (father of Anna, 13)