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Hi All -- Yes, take these reports very seriously. Ted is now down to 300 mg of dilantin (pompous neuro just doesn't give up) and on about 1600 mg of tegretol as of today. I have observed no visible seizure activity today. He was just moved back to Intermediate Care from ICU. Frankly, I get the impression that the neuro was rather surprised. As I said earlier, I don't think he had any sort of plan other than dilantin. I honestly think that is all he knows. Ted said neuro seemed almost overjoyed at his improved condition last night. Neuro has not once contacted me to tell me anything during all of this. He is from another culture and appears to have great difficulty talking (down) to women. I had to go to his office and get in his face, so to speak, about he dilantin. Problem is, the other three neuros here aren't any better. If I can get Ted well enough without them screwing him up any further and get him out of the hospital, we'll find someone else. Attending doc (resident who has been wonderful!) told me to see the Chief of Staff if necessary. Of course, he is not in on the weekends. They all kind of look at me now like "here she comes again." :-) They aren't aware that this is being followed by people all over the country and beyond its borders. Take care all -- Carole -----Original Message----- From: Mary Ann Ryan <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Sunday, January 06, 2002 8:50 AM Subject: Re: BETTER NEWS! >> Ted is the third PWP I'm aware of whose condition worsened when he was >> put on Dilantin by a physician, and improved when the family intervened >> to have the Dilantin removed. >> Kathrynne >> > >Wow, Kathrynne, thanks for this very important info. I've been following >Ted's progress but didn't have a clue as to what was going on. > >In severe cases of PD, anecdotal information is very important. It is >critical for care givers on this list to take case reports about drug >information very seriously - we never know when our loved ones will be the >next victims of whatever drug reaction is being discussed. As a nurse, I >know that it is impossible for all drug interactions to be reported in the >PDR. > >I pray that Ted will continue to get better. I'm sorry about the problems >that Carole has had with their neuro. > > Carole, if you're out there, it is your right to change neuros in the >hospital - no matter what the recommendation of the medical staff may be. >You're the one who is paying for the service that Ted is receiving. Like >all consumers, you have a right to say you don't like the product you've >bought and want a new one. Doctors are like state-of-the-art computers. >They might be rare and expensive, but there is always a comparable one out >there that can meet your needs more effectively. >----- >God bless >Mary Ann > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn