Hi everyone. Josee wrote me with a question about something in my other letter and I thought everyone could benefit from the answer, so here goes.

Depakote and Depakene are the same thing. One is in sprinkle form and the other is a liquid. They are both Valproic Acid.

Dr. Dobyns feels that more than two seizure drugs at a time is not advisable, partly because it gets more and more difficult to tell which one is helping. The exception is as you are adding one, before you take one away of course you are going to be on three for a while. But as a more permanent thing he feels the goal should be seizure control with no more than two medicines. If that doesn't work then change meds rather than adding more on top of one another. By the way our local neurologist generally feels the same way, which is why we are weaning off phenobarb.

I know that a lot of the kids are on more than two seizure drugs, and my unprofessional opinion is, if it works, STICK WITH IT!!! Also his rule of two drugs only applies to seizure drugs. So for instance if you were on Topamax and Sabril, then being on Robinul too wouldn't break the rule, since it isn't there to control seizures, but to control drooling or whatever.

Josee said her doctor had never mentioned a shorter lifespan associated with Depakene/Depakote. I don't think in general it shortens the life span. I think what he meant was that in the rare case of the liver damage problem, THAT child would of course not live as long. I believe (someone correct me if I'm wrong), there are some liver function tests they can do periodically to test whether there is damage being done. If these have been fine there is no reason to suspect problems until they occur.

Also something I just plain forgot to mention in my other letter was that it is possible to test levels of Topamax, just like Julia has had phenobarb levels done. Neither Bob nor I knew that. Dr. Dobyns said a Topamax level of around 20 is a good therapeutic range. He said the levels are seldom tested because nobody knew what they meant...and that is a vicious circle because until more people test them, nobody will ever figure out what they mean. Also he said the test is expensive. So I don't know because he didn't say, if insurance has been covering this test for people, and I'd be interested to know if anyone's has...

Okay, on to Part two...

Reporting from the not-quite-as-hot-as-yesterday Northeast,
Scoop Merritt, mom to Julia age 18 months with MDS