Post by Amy Lombardi on Mar 31, 2009 12:09:43 GMT -5
Subject: seizures
Name: Amiee
Date Posted: Nov 17, 08 - 10:34 AM
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Message: My daughter Madison (13 yrs.) has JNCL. We have gone through so many different meds trying to control her seizures. We started with Trileptal which made them worse. We tried Keppra which was great for 2 1/2 year not one seizure until we had to take her off of it this summer do to Psychosis as a side affect. We have added Clonezepam and Risperdal for the psychosis and put her on Lyrica. Two weeks ago she had 4 grand mal seizures within 18 hours and after the last seizure I took her to the hospital where they determined with an eeg that she was having seizures that lasted 5-10 seconds about every ten minutes. We started her on Depakote. My fingers are crossed but the dostor said that there was one more seizure medication we could try after the depakote if it didn't work and that we are running out of options. Has anyone experienced this? Any suggestions?
Name: Ruth Hardin
Date Posted: Nov 17, 08 - 11:27 AM
Message: Hi Amiee, I'm sorry to hear of your struggle with seizures. Our daughter Kelsie, age 17 JNCL, takes a combination of depakote and topamax. She has been seizure-free for a few years on this "thingytail". Best of luck, Ruth
Name: Mary Beth
Date Posted: Nov 17, 08 - 3:29 PM
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Message: Hi Amiee, My son Aaron 13 JNCL takes depakote and Lamictal. Dr. needed to adjusted the dose a couple of times but he has been seizure free since April. It seems like most of the Battens kids are on 2 meds to controll the seizures.Hang in there. Prayers are with you and our family.
Name: Pat Pfaller
Date Posted: Nov 18, 08 - 9:06 PM
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Message: Hi! My daughter Sara (16 JNCL) has been on Ativan for many years now. She also takes Risperdal for behavior. In the past she took Depakote, which made her gain 40 pounds; Topamax, which made her lose her words; Lamictal, which she had a severe allergic reaction to and had to be hospitalized. Through all these she was taking Ativan, so now that's all she takes for seizures. She still has a seizure about once a month or so, but it's manageable, and she now knows when she is going to have one, so she can tell me. I also know the signs to look for!
Good luck! You have not nearly begun to run out of options; perhaps you need to find a neurologist in a big city that works at a teaching hospital; they seem to be the most up on what's new, and perhaps even more interested in finding you help.
Pat
Name: Amiee
Date Posted: Nov 17, 08 - 10:34 AM
Email: Click here to Email
Message: My daughter Madison (13 yrs.) has JNCL. We have gone through so many different meds trying to control her seizures. We started with Trileptal which made them worse. We tried Keppra which was great for 2 1/2 year not one seizure until we had to take her off of it this summer do to Psychosis as a side affect. We have added Clonezepam and Risperdal for the psychosis and put her on Lyrica. Two weeks ago she had 4 grand mal seizures within 18 hours and after the last seizure I took her to the hospital where they determined with an eeg that she was having seizures that lasted 5-10 seconds about every ten minutes. We started her on Depakote. My fingers are crossed but the dostor said that there was one more seizure medication we could try after the depakote if it didn't work and that we are running out of options. Has anyone experienced this? Any suggestions?
Name: Ruth Hardin
Date Posted: Nov 17, 08 - 11:27 AM
Message: Hi Amiee, I'm sorry to hear of your struggle with seizures. Our daughter Kelsie, age 17 JNCL, takes a combination of depakote and topamax. She has been seizure-free for a few years on this "thingytail". Best of luck, Ruth
Name: Mary Beth
Date Posted: Nov 17, 08 - 3:29 PM
Email: Click here to Email
Message: Hi Amiee, My son Aaron 13 JNCL takes depakote and Lamictal. Dr. needed to adjusted the dose a couple of times but he has been seizure free since April. It seems like most of the Battens kids are on 2 meds to controll the seizures.Hang in there. Prayers are with you and our family.
Name: Pat Pfaller
Date Posted: Nov 18, 08 - 9:06 PM
Email: Click here to Email
Message: Hi! My daughter Sara (16 JNCL) has been on Ativan for many years now. She also takes Risperdal for behavior. In the past she took Depakote, which made her gain 40 pounds; Topamax, which made her lose her words; Lamictal, which she had a severe allergic reaction to and had to be hospitalized. Through all these she was taking Ativan, so now that's all she takes for seizures. She still has a seizure about once a month or so, but it's manageable, and she now knows when she is going to have one, so she can tell me. I also know the signs to look for!
Good luck! You have not nearly begun to run out of options; perhaps you need to find a neurologist in a big city that works at a teaching hospital; they seem to be the most up on what's new, and perhaps even more interested in finding you help.
Pat