tag:blogger.com,1999:blog-2584570468185542765.post4725278392479107006..comments2022-03-27T06:30:56.890-05:00Comments on Austin's IS Journey: Why no update?Hollihttp://www.blogger.com/profile/00535016211470087504noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-2584570468185542765.post-70212225854391313072009-08-19T08:45:41.687-05:002009-08-19T08:45:41.687-05:00how amazingly frustrating. I definitely learned to...how amazingly frustrating. I definitely learned to trust my own instincts and made small changes on my own.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-72506061926266254242009-08-18T22:18:56.767-05:002009-08-18T22:18:56.767-05:00Holli...I am SO sorry this happened with your doc....Holli...I am SO sorry this happened with your doc...I, too, would have done exactly like you did....<br /><br />I DESPISE working with these meds...We started Banzel way back in March, and we STILL are not at the therapeutic dose...We go EXTREMELY slow because of past problesm...And we never decrease one while increasing another....I don't even know if it is doing much, anyway...Colby had ~ 15 drops today....I called and our GP changed his antibiotic for his ear inf. to a Zpack...Maybe that will do it...WHO KNOWS????!!!! <br /><br />I feel like it is all a crapshoot anyway....<br /><br />Let us know how he does....<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-87552867905450174052009-08-18T19:53:07.633-05:002009-08-18T19:53:07.633-05:00Clowns are creepy, don't you think?
I hate, H...Clowns are creepy, don't you think?<br /><br />I hate, HATE, the med game.<br /><br />Sorry so short, but I'm beat. Long day on the road and in meetings saying the same things and hearing the same things from three different people at three different times in the same super sweltering room. I think some of me melted.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-61551959409916059662009-08-18T14:12:38.997-05:002009-08-18T14:12:38.997-05:00Marissa's Dad and Danielle -Our epi actually g...Marissa's Dad and Danielle -Our epi actually gave us a written plan of how to slowly increase the Felbatol and decrease the zonisamide. When his seizures increased so much last week, I decreased the Felbatol back to his previous dose out of panic and lack of communication from the epi. If he wouldn't have improved, I would have most likely gotten back on track with our dosing plan. Since he did improve, I wasn't sure where to go from there. It was so confusing!!!Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-34739819768767497962009-08-18T13:39:43.948-05:002009-08-18T13:39:43.948-05:00I know it feels so scary to be making these judgme...I know it feels so scary to be making these judgment calls on your own. But you did the right thing. And honestly...you are the most qualified (within the perimeters defined by Marrisa's Dad)to moniter and administer. Because you're there in real time...and heart connection. <br /><br />Maybe you should discuss this with your epi...and ask him if he's comfortable with you working within an established doseage? <br /><br />Our neuro pretty much trusts me instinct and lets me move Trevy's meds as I feel best. It was very scary in the beginning. But it gets easier...<br /><br />And btw...it doesn't mean that I'm not angry with you that your epi isn't available! If he can't be there to give you guidance each time...then he should have already established a protocol with you. <br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2584570468185542765.post-37680908790248566242009-08-18T13:08:47.764-05:002009-08-18T13:08:47.764-05:00When we get a new med, we have a conversation with...When we get a new med, we have a conversation with the Doctor that starts with what's the initial dose, and ends with the comfort level of the doctor on how high we can increase at home without a back and forth from the office, which as you know is a hassle.<br /><br />Admittedly, we've got a good doctor, and I've got a very strong science background, so that may help, and your mileage may vary...Marissa's Dadhttp://www.marissasbunny.comnoreply@blogger.com