Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 My Doctor in DE always mentions Cleveland Clinic as the place to go if we ever need to do surgery. Sent from my iPad > > > Dr. Elaine Wyllie - Cleveland Clinic. Hands down. I've seen doctors all over the US and her name crops up over and over again. > > We did surgery in August (no pressure from doctor at all, by the way). If you want to talk about what it was like you can contact me on Facebook (there are pictures) under Swingler-Holman or call me . It took us 3 years to make the decision. > > How old is your child? We are doing vimpat as well. It was our drug of last resort. Please feel free to call / contact me. > > Keto has good results depending in the age of the child. It was not an option, neither was VNS. > > > > Sent from my iPhone > > On Jan 31, 2012, at 8:21 PM, " jessica.thayer " wrote: > > > My son has MPPH Syndrome and began having regular seizures in September. They can last anywhere from 25 min(cluster; Clonazepam .5mg is given after 7 min) to three minutes (clonic tonic; Diastat is given). Average of about 2 a week. Most occur after his nap in the afternoon; however, several have been random. They occur on average twice a week. We have been recommendation to do surgery but would like to exhaust all mediation options frist. Here is list of the meds and dosages that we have tried. > > > > Current: > > Keppra 7mL (3mL am; 4mL pm) > > Vimpat 250mg (100mg am; 150mg pm) > > > > Previous Mediations: > > Topamax (125mg; 50mg am, 75mg pm) – caused fevers resulting in additional seizures > > Trileptal (3mL q12) – on for approx. a month taken off and moved to Vimpat > > > > Any suggestions of medication or neurologists specializing in epilepsy that you have had success with would be helpful. > > > > Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 What about Lamictal? Where are located?Diane To: polymicrogyria From: jessica.thayer@... Date: Wed, 1 Feb 2012 01:21:37 +0000 Subject: Seizures My son has MPPH Syndrome and began having regular seizures in September. They can last anywhere from 25 min(cluster; Clonazepam .5mg is given after 7 min) to three minutes (clonic tonic; Diastat is given). Average of about 2 a week. Most occur after his nap in the afternoon; however, several have been random. They occur on average twice a week. We have been recommendation to do surgery but would like to exhaust all mediation options frist. Here is list of the meds and dosages that we have tried. Current: Keppra 7mL (3mL am; 4mL pm) Vimpat 250mg (100mg am; 150mg pm) Previous Mediations: Topamax (125mg; 50mg am, 75mg pm) – caused fevers resulting in additional seizures Trileptal (3mL q12) – on for approx. a month taken off and moved to Vimpat Any suggestions of medication or neurologists specializing in epilepsy that you have had success with would be helpful. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2012 Report Share Posted January 31, 2012 The neurosurgeon here is Dr Bingaman and he's an amazing surgeon - and has a great bedside manner. He's the reason we finally did it. I felt confident in him and he talked TO my daughter. And the support was amazing. I'm lucky to live 15 miles away. Sent from my iPhone > My Doctor in DE always mentions Cleveland Clinic as the place to go if we ever need to do surgery. > > Sent from my iPad > > > > > > > > > Dr. Elaine Wyllie - Cleveland Clinic. Hands down. I've seen doctors all over the US and her name crops up over and over again. > > > > We did surgery in August (no pressure from doctor at all, by the way). If you want to talk about what it was like you can contact me on Facebook (there are pictures) under Swingler-Holman or call me . It took us 3 years to make the decision. > > > > How old is your child? We are doing vimpat as well. It was our drug of last resort. Please feel free to call / contact me. > > > > Keto has good results depending in the age of the child. It was not an option, neither was VNS. > > > > > > > > Sent from my iPhone > > > > On Jan 31, 2012, at 8:21 PM, " jessica.thayer " wrote: > > > > > My son has MPPH Syndrome and began having regular seizures in September. They can last anywhere from 25 min(cluster; Clonazepam .5mg is given after 7 min) to three minutes (clonic tonic; Diastat is given). Average of about 2 a week. Most occur after his nap in the afternoon; however, several have been random. They occur on average twice a week. We have been recommendation to do surgery but would like to exhaust all mediation options frist. Here is list of the meds and dosages that we have tried. > > > > > > Current: > > > Keppra 7mL (3mL am; 4mL pm) > > > Vimpat 250mg (100mg am; 150mg pm) > > > > > > Previous Mediations: > > > Topamax (125mg; 50mg am, 75mg pm) – caused fevers resulting in additional seizures > > > Trileptal (3mL q12) – on for approx. a month taken off and moved to Vimpat > > > > > > Any suggestions of medication or neurologists specializing in epilepsy that you have had success with would be helpful. > > > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Of course! Sent from my iPhone > Malisa can I add u on Facebook as well?? > > Best Regards, > Lina Kurdi > > > > > > > > > Dr. Elaine Wyllie - Cleveland Clinic. Hands down. I've seen doctors all over the US and her name crops up over and over again. > > > > We did surgery in August (no pressure from doctor at all, by the way). If you want to talk about what it was like you can contact me on Facebook (there are pictures) under Swingler-Holman or call me . It took us 3 years to make the decision. > > > > How old is your child? We are doing vimpat as well. It was our drug of last resort. Please feel free to call / contact me. > > > > Keto has good results depending in the age of the child. It was not an option, neither was VNS. > > > > > > > > Sent from my iPhone > > > > On Jan 31, 2012, at 8:21 PM, " jessica.thayer " wrote: > > > > > My son has MPPH Syndrome and began having regular seizures in September. They can last anywhere from 25 min(cluster; Clonazepam .5mg is given after 7 min) to three minutes (clonic tonic; Diastat is given). Average of about 2 a week. Most occur after his nap in the afternoon; however, several have been random. They occur on average twice a week. We have been recommendation to do surgery but would like to exhaust all mediation options frist. Here is list of the meds and dosages that we have tried. > > > > > > Current: > > > Keppra 7mL (3mL am; 4mL pm) > > > Vimpat 250mg (100mg am; 150mg pm) > > > > > > Previous Mediations: > > > Topamax (125mg; 50mg am, 75mg pm) – caused fevers resulting in additional seizures > > > Trileptal (3mL q12) – on for approx. a month taken off and moved to Vimpat > > > > > > Any suggestions of medication or neurologists specializing in epilepsy that you have had success with would be helpful. > > > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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