Dravet Syndrome

http://www.dravetfoundation.org 

According to the Dravet Syndrome website Dravet presents itself with:

•  Seizures of various types beginning in the first 12 months of life
• Seizures begin as febrile, but later also appear without a fever 
• Episodes of status epilepticus (prolonged seizures) 
• Seizures do not respond to standard anticonvulsant drugs 
• Initial development is normal, then slows or stagnates in the second year of life 
• Myoclonic seizures occur around the age 18 months of age 
• Seizures associated with vaccinations, hot baths, or warm temperatures

Seizures of various types beginning in the first 12 months of life Seizures begin as febrile, but later also appear without a fever Episodes of status epilepticus (prolonged seizures) Seizures do not respond to standard anticonvulsant drugs Initial development is normal, then slows or stagnates in the second year of life Myoclonic seizures occur around the age 18 months of age Seizures associated with vaccinations, hot baths, or warm temperatures - See more at: http://www.dravetfoundation.org/dravet-syndrome/medical-information/diagnosis-testing#sthash.IAImMpnE.dpuf

There are daily medications, then there are rescue medications. The rescue medications are given when seizures requires emergency intervention. Sometimes even those don't work and that means a ride in an ambulance. There are anti-seizure medications that shouldn't be given to someone with Dravet because it will actually cause seizures. 

There are also alternative treatments that have had some success, VNS (Vagus Nerve Stimulation), Ketogenic Diet, IVIG (Intravenous Immunoglobulin), and CBN (cannibidol).

 
There are also a whole list of secondary health issues that must be monitored that include: sleep disorders, dental health concerns, cardiovascular conditions, and weakened immunity. It's a daily balancing act.

Intravenous Immunoglobulin

Earmarks of the syndrome include:

• Seizures of various types beginning in the first 12 months of life
• Seizures begin as febrile, but later also appear without a fever
• Episodes of status epilepticus (prolonged seizures)
• Seizures do not respond to standard anticonvulsant drugs
• Initial development is normal, then slows or stagnates in the second year of life
• Myoclonic seizures occur around the age 18 months of age
• Seizures associated with vaccinations, hot baths, or warm temperatures

- See more at: http://www.dravetfoundation.org/dravet-syndrome/medical-information/diagnosis-testing#sthash.IAImMpnE.dpuf