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
100’s 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 don’t’ 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 ½ 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
