Name Sex Date of birth Country Diagnoses SCN1A test Frequency Seizures Current medication Previous medication Date of input
Alexander M July 8, 2005 MA, United States Dravet's Syndrome Yes tonic clonic about 1 every 1-2 months, not sure about the absence, partials about 1-3 per month. And myoclonic seizures from 100-200 or more per day. Keppra, Phenobarbital,Clobazam, Clonodine and B6 & Ketogenic Diet (July 2007) Zonisamide,Clonazapam May 2007
Amanda F June 2003 Illinois, United States Dravet's Syndrome Yes 100ís of myoclonic and head drops every day. Since starting the diet in 2004, we only have tonic-clonic and partial seizures when ill. Keppra, Clobazam & Ketogenic Diet Phenobarbitol, Topamax
Charlotte F 08/04/1999 Germany Dravet's Syndrome No Myoclonic seizures daily (getting much better over the years, actually 5 to 50 a day), tonic-clonic seizures about one per week, partial seizures frequently Topiramate, Valproate both in a minimal dosage, Clobazam on bad days (max. 4 days), Diazepam to interrupt Status Lamictal, Sultiam, Keppra February 2005
Claire F 03/08/2006 South Africa Dravet's Syndrome No as had three serious ones over the three months. Epilum - 3ml morning & 3ml evening Ativan & Rotravil, when seizures donítí stop on their own Lethyl (Phenobarbitone) June 2007
Dustin M 11/06/1990 Nebraska, USA Dravet's Syndrome No tonic-clonic followed by myoclonics during sleep every 7-9 days with breakthrough tonic-clonics every 10-12 weeks Depakote, carnitor, felbatol, clonazepam Keppra, nitrazepam, and a slew of others December 2004
Giorgio M 11.01.2001 Italy Dravet's Syndrome Yes 4 per month with fever mogadon (benzodiazepine) topiramate , sodio valporate, Diacomit stiripentol
Isaac M 02/08/2004 Australia Dravet's Syndrome Yes Started with TC every 8-10 Days with 17 Ĺ wks the Record, now 3wks and counting, Absence Seizures Daily, Myoclonic & Atonic not sure? Topamax (Topiramate) & Epilim (Sodium Valproate) Tegretol (Carbamazepine)
Jake M 11/24/2000 Netherlands Dravet's Syndrome Yes Rarely TC, myoclonic and atonic daily Topamax, Zarontin - Ethymal, Keppra Depakene, Tegretol December 2004
Jarod M 1998 Australia Dravet's Syndrome No, not yet TC every 6 weeks epilim, clonazepam and topamax phenytoin, clobazam, Lamotragine December 2004
Jo M 03/06/2002 Belgium Dravet's Syndrome Yes Rarely TC, myoclonic daily Depakene, Keppra, Frisium - December 2004
Kimberly F 21.05.2005 Germany Dravet's Syndrome No Myoclonic every day, Grand Mals all 2 - 4 Weeks, Absences daily Luminalten, Orfiril, Brom none
Siebe M 07/05/2003 Belgium Dravet's Syndrome Yes 1 every two to three months Depakine, Topamax, Frisium and vit B6 None February 2006
Sydney F April, 2001 KY, USA Dravet's Syndrome No some days 300 seizures, some days only 50 seizures, any type Topomax - 2nd try, Midozalom (Versed), Keto diet Keppra, Depakote, Ativan, Lamictal, Topomax, Klonopin, Zongran, Diastat, Fosphenytoin and more! December 2004
Teigan F 04/23/1998 Alberta, Canada Dravet's Syndrome Yes about 2 per month now, any type Lorazepam (Ativan) Phenobarbital, Clobazam (Frisium), Topiramate (Topamax),Carbamazepine (Tegretol, Carbatrol), Gabapentin (Neurontin), Valproic Acid (Depakene, Epival), Lamotrigine (Lamictal) December 2004

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