Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Does anyone see a good neurologist in Ohio, Indiana, or Kentucky--perhaps one who has some expertise in seizures? We are looking to get some additional information/help with 's seizures. They have really gone out of control recently. We got a few days' relief last week when her medication was increased, but she's back to having a really rough time this week. Her current neurologist is a nice guy and I'm sure knows his stuff, but his only course of action is always to just increase her medication. There's no dialogue about why these are becoming more prevalent, what the triggers might be, why they seem to be so much worse in the evenings, what other options there might be to help her in addition to the meds, etc. When we ask these questions (which we have again and again), we really don't get any answers/discussion. I'm sure the doctor may possibly be stumped by , but he comes across as really UNconfident. It's getting too rough to watch her go through this every day without trying to get her some help. We're willing to travel if we have to. , mom to (4) http://kauffmanlak.blogspot.com/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 go to flos one LOL or is uk to far > > Does anyone see a good neurologist in Ohio, Indiana, or > Kentucky--perhaps one who has some expertise in seizures? > > We are looking to get some additional information/help with 's > seizures. They have really gone out of control recently. We got a few days' > relief last week when her medication was increased, but she's back to having > a really rough time this week. Her current neurologist is a nice guy and I'm > sure knows his stuff, but his only course of action is always to just > increase her medication. There's no dialogue about why these are becoming > more prevalent, what the triggers might be, why they seem to be so much > worse in the evenings, what other options there might be to help her in > addition to the meds, etc. When we ask these questions (which we have again > and again), we really don't get any answers/discussion. I'm sure the doctor > may possibly be stumped by , but he comes across as really UNconfident. > > It's getting too rough to watch her go through this every day without > trying to get her some help. We're willing to travel if we have to. > > , mom to (4) > http://kauffmanlak.blogspot.com/ > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 , There is a good neurologist that my son ph has seen here in Muncie, IN. His name is Panszi. He is easy to talk to and a lot of people like him. His number is . He at least knows CHARGE, from seeing my son, but I like the way he treated my son. Let me know if this helpful. I can't remember right off the top of my head where you are located. We are only a two hour drive from Cincinnati, or about 3 from Lexington. - Mom to 24 yr old cHaRGE'r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 , I am so sorry this is happening!! Other than being extremely frightening (the escalation, etc.) I can imagine the frustration. I am hoping Sally Prouty is reading this because....Sally, when I was last in your neck of the woods there was a woman neurologist who originally was from Boston Children's who had moved your way. She presented at the same conference as Veronika and I--do you remember her name? She seemed awfully good and was getting to know CHARGE. I believe she was in or going to IN.?? pam Neurologist - OH, IN, KY? Does anyone see a good neurologist in Ohio, Indiana, or Kentucky--perhaps one who has some expertise in seizures? We are looking to get some additional information/help with 's seizures. They have really gone out of control recently. We got a few days' relief last week when her medication was increased, but she's back to having a really rough time this week. Her current neurologist is a nice guy and I'm sure knows his stuff, but his only course of action is always to just increase her medication. There's no dialogue about why these are becoming more prevalent, what the triggers might be, why they seem to be so much worse in the evenings, what other options there might be to help her in addition to the meds, etc. When we ask these questions (which we have again and again), we really don't get any answers/discussion. I'm sure the doctor may possibly be stumped by , but he comes across as really UNconfident. It's getting too rough to watch her go through this every day without trying to get her some help. We're willing to travel if we have to. , mom to (4) http://kauffmanlak.blogspot.com/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 , It sounds like you've already gotten a few good leads but I wanted to let you know about Jayden's neurologist anyway. He is very confident and extremely knowledgeable when it comes to new treatments for seizures. He doesn't have the best bedside manner, but he knows his stuff. His name is Dr. Vinay Puri and his office is in the Children's Hospital Foundation Building cattycornered from Kosair Children's Hospital here in Louisville, Kentucky. His phone number is . I hope gets some relief soon. I know how heartbreaking it is watching your child suffer through terrible seizures and having to just standby and helplessly watch. Have a great holiday season! Love, Vicki Fields (Jayden's Mommy) www.caringbridge.org/visit/jayden Does anyone see a good neurologist in Ohio, Indiana, or Kentucky--perhaps one who has some expertise in seizures? We are looking to get some additional information/help with 's seizures. They have really gone out of control recently. We got a few days' relief last week when her medication was increased, but she's back to having a really rough time this week. Her current neurologist is a nice guy and I'm sure knows his stuff, but his only course of action is always to just increase her medication. There's no dialogue about why these are becoming more prevalent, what the triggers might be, why they seem to be so much worse in the evenings, what other options there might be to help her in addition to the meds, etc. When we ask these questions (which we have again and again), we really don't get any answers/discussion. I'm sure the doctor may possibly be stumped by , but he comes across as really UNconfident. It's getting too rough to watch her go through this every day without trying to get her some help. We're willing to travel if we have to. , mom to (4) http://kauffmanlak.blogspot.com/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Well, Ellen, although I love London (have been a couple of times) and would love the chance to visit with Flo, Simon, and the girls, I think that might be a bit far to go for a neurology appointment! LOL , mom to (4) http://kauffmanlak.blogspot.com/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 , Thank you so much for this suggestion! We are in Cincinnati, so only two hours from you. That wouldn't be bad at all. It would be so good to talk to a neurologist who at least knows something about CHARGE. , mom to (4) http://kauffmanlak.blogspot.com/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 Thanks for this lead, too, Vicki. We used to live in Louisville, so we're very familiar with the area and would be very comfortable going there for help. I can deal with the bad bedside manner if the doctor knows his stuff! Lots of great leads from everyone to check out. That's why I love this list so much--you guys are the experts! > > , > > It sounds like you've already gotten a few good leads but I wanted to let you know about Jayden's neurologist anyway. He is very confident and extremely knowledgeable when it comes to new treatments for seizures. He doesn't have the best bedside manner, but he knows his stuff. His name is Dr. Vinay Puri and his office is in the Children's Hospital Foundation Building cattycornered from Kosair Children's Hospital here in Louisville, Kentucky. His phone number is . I hope gets some relief soon. I know how heartbreaking it is watching your child suffer through terrible seizures and having to just standby and helplessly watch. Have a great holiday season! > > Love, > > Vicki Fields (Jayden's Mommy) > > www.caringbridge.org/visit/jayden > > > Does anyone see a good neurologist in Ohio, Indiana, or Kentucky--perhaps one who has some expertise in seizures? > > We are looking to get some additional information/help with 's seizures. They have really gone out of control recently. We got a few days' relief last week when her medication was increased, but she's back to having a really rough time this week. Her current neurologist is a nice guy and I'm sure knows his stuff, but his only course of action is always to just increase her medication. There's no dialogue about why these are becoming more prevalent, what the triggers might be, why they seem to be so much worse in the evenings, what other options there might be to help her in addition to the meds, etc. When we ask these questions (which we have again and again), we really don't get any answers/discussion. I'm sure the doctor may possibly be stumped by , but he comes across as really UNconfident. > > It's getting too rough to watch her go through this every day without trying to get her some help. We're willing to travel if we have to. > > , mom to (4) > http://kauffmanlak.blogspot.com/ > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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