Stop Mestinon For Testing?

[spaceorca]

Hi, everyone. Several years ago, Dr. Grubb diagnosed my son Dan with severe dysautonomia. Since then, Dan has taken Mestinon and a number of other drugs that help somewhat (although he's still pretty disabled). We're not able to travel frequently to Toledo, and Dr. Grubb has cut back his practice, so we're working now with a new doctor in our home town. This new doctor seems very good--interested in and at least somewhat knowledgeable about autonomic disorders. He doesn't see the need to do a whole range of tests on Dan, but would like to do a QSART. To do that, Dan would need to go off some of his drugs for 48 hours.

Our question is: How severely will going off the mestinon affect him? I'm particularly concerned about GI effects because, prior to taking the mestinon, Dan was hospitalized several times for pseudo obstruction (i.e., intestines that had virtually stopped). The doctor is sympathetic and we're going to talk with him more about this, but I wanted to check on experiences any of you have had. Have any of you gone off mestinon for a few days for testing? Has going off the drug had severe effects? Were you able to go back on and regain whatever help you had obtained from it?

I have the same questions with respect to flomax, which seems to help Dan's urinary retention. So any comments on going off that drug would also be welcome. But mestinon seems like the big question! Thanks, Debby