tag:blogger.com,1999:blog-5505187301023634468.post1914072792401681395..comments2023-12-26T20:52:08.357+00:00Comments on The Sound of the Silent: In real-time, a trying nightThe Sound of the Silenthttp://www.blogger.com/profile/09669598042879486343noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-5505187301023634468.post-85146349696625792732016-12-04T11:25:22.097+00:002016-12-04T11:25:22.097+00:00Thank you so much for all this inside information....Thank you so much for all this inside information. We just brought home our first batch of Vimpat and googled it to learn when to administer - before/during/after food. Well, the first warning that pops up is: if you have liver problems, beware!<br />So now, having read that, along with your encouragement to try weathering this rough period without Vimpat, I'm holding off for the moment. If we get into the same awful status we were in last night I'll probably weaken and go for the Vimpat.The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-5505187301023634468.post-53081927540540211112016-12-04T01:50:43.466+00:002016-12-04T01:50:43.466+00:00Oh my gosh. I hate reading this and hearing of you...Oh my gosh. I hate reading this and hearing of your girl's and your own suffering. I find it shocking that the doctors don't believe the liver damage is from anticonvulsants. Honestly, that sounds like bullshit to me. I don't think they know anything, really, at this point -- for kids like yours and mine. The recent experience I had in hospital with Sophie because of hives is a good case in point. She developed the hives -- giant ones -- last year, and after doing some sleuthing online, I read that Vimpat can cause, rarely, giant hives. When I told the neuro this, she agreed that Sophie should come off the Vimpat (even though she'd been on it for EIGHT years!). I cut the dose in half and then weaned her down to a small amount. The hives disappeared. One year later, they returned, and her seizures started increasing as well. When we went in the hospital, the neuros disagreed that Vimpat caused the hives and ordered a GIANT IV dose of Vimpat. Within two hours of the IV dose, she had broken out in giant hives over her entire body. The neuros gasped and stopped the Vimpat, apologizing to me. They discussed it over the next few days, in consultation with an allergist and an immunologist and decided that it wasn't the Vimpat after all. I was incredulous. I refused to add the Vimpat back and insisted that we leave with only increased Onfi and the CBD. On discharge, I noticed on the discharge papers, a new "allergy" in Sophie's record (she has no other allergies or drug allergies or health conditions): VIMPAT. I'm telling you this long story so that you might go with your gut. Don't be afraid of not trying Vimpat. It's worth seeing how she'd do -- I'm certain that C is probably going through some terrible withdrawals, and if you can hang on and get through them, you might get to the other side. That being said, though, Vimpat is generally an easily tolerated drug, and it helped Sophie a bit for the eight years she was on it. I'm convinced her body was in toxic overload at some point. Since she's gone off the Vimpat she's had no hives again.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com