Many of you faithful readers of the Family Gazette know that Sue has been part of a long-term drug trial for a medication that promises better control for seizures. Sue has suffered from seizures of various kinds since she had encephalitis in late 2004. The drug she has been taking, perampanel, gained FDA approval earlier this year. For what ever reason, at the last routine visit (May 28) with the neurologist, Dr. R. E. Hogan, who has been running the program at the Center for Advanced Medicine, the drug company withdrew the the drug abruptly. Sue has gone downhill ever since.
Sue went to the lake with Linda, her friend and caregiver, on May 31, even though she was already a bit unsteady on her feet. Her conditioned worsened over the next few days. She fell several times, was depressed, and grew weaker. Mark Goldman took over for Linda on June 3. Sue, Linda, Mark, and I were in communication with Hogan's office about the situation. Dr. Hogan adjusted her meds a couple of times, but nothing helped. His instructions were to take Sue to the emergency room at Barnes if her condition continued to deteriorate.
Finally, yesterday, (Saturday, June 15) Mark and Sue came home. Chris came over, and he and I took Sue to ER at Barnes where she was admitted. She now is on a floor for careful monitoring, both by video cam and measurement of brain activity. We are hopeful that this will be a very short stay, the med situation will get ironed out, and Sue will be returning to the lake this week. Of course, she is upset, depressed, and saddened by this turn of event. I am baffled and angry by the sudden withdrawal of the trial drug, especially when all the literature about it says withdrawal should be managed slowly and carefully to avoid just this kind of thing.
Sue was so weak and down-hearted, she could not talk with Brother Pete for their routine Saturday morning phone conversation--a measure of just how bad she felt. He called me to see what was going on. A piece of really good news from him is how well Janet is doing. They were off on a road trip to Merri's (their daughter) some 120 miles away today, the first jaunt like that Janet has been able to make for some time.
Sue went to the lake with Linda, her friend and caregiver, on May 31, even though she was already a bit unsteady on her feet. Her conditioned worsened over the next few days. She fell several times, was depressed, and grew weaker. Mark Goldman took over for Linda on June 3. Sue, Linda, Mark, and I were in communication with Hogan's office about the situation. Dr. Hogan adjusted her meds a couple of times, but nothing helped. His instructions were to take Sue to the emergency room at Barnes if her condition continued to deteriorate.
Finally, yesterday, (Saturday, June 15) Mark and Sue came home. Chris came over, and he and I took Sue to ER at Barnes where she was admitted. She now is on a floor for careful monitoring, both by video cam and measurement of brain activity. We are hopeful that this will be a very short stay, the med situation will get ironed out, and Sue will be returning to the lake this week. Of course, she is upset, depressed, and saddened by this turn of event. I am baffled and angry by the sudden withdrawal of the trial drug, especially when all the literature about it says withdrawal should be managed slowly and carefully to avoid just this kind of thing.
Sue was so weak and down-hearted, she could not talk with Brother Pete for their routine Saturday morning phone conversation--a measure of just how bad she felt. He called me to see what was going on. A piece of really good news from him is how well Janet is doing. They were off on a road trip to Merri's (their daughter) some 120 miles away today, the first jaunt like that Janet has been able to make for some time.
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