http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome) is one of the most difficult-to-control forms of
epilepsy. Also known as Severe Myoclonic
Epilepsy of Infancy (SMEI), it is characterized by developmental delays,
frequent
infections, sleeping problems, growth and nutritional issues, and difficulty
walking, among other things. It is a very devastating syndrome, which starts by
a gene mutation (SCN1A) in 80% of people.
Generally, it starts in infancy and the seizures do not respond well to
medications. Also, EEGs and MRIs are
normal at infancy. However, when
seizures start and intensify, development delays occur.
The types of seizures associated
with Dravet syndrome are:
Myoclonic—shock-like jerk of a
muscle or muscles, person is aware
Tonic clonic—stiff, fall, jerk, a
few minutes long; if longer than 5 minutes long, call 911
Atypical Absence—staring and
unresponsive, eye-blinking, jerking of the lips, 5-30 seconds, can’t be
produced by holding breath
Absence—staring, only a few seconds
long, can resume activity; complex—lip smacking, chewing motions, moving hands
Atonic—loss of muscle tone, if
standing the person will fall
Non convulsive Status epilepticus—clusters
of seizures
Dravet Syndrome became well-known thanks
to a young girl named Charlotte Figi
who has that type of epilepsy. She tried medical marijuana and her seizures
improved greatly.
However,
this is not the answer for everyone.
Medical marijuana (cannabis) success stories are mostly anecdotal. So far, there have not been many studies on the effectiveness of medical marijuana
because of the restrictions of the law.
There are only a few states in the U.S. where it is legal.
Until
we have definitive research that concludes that CBD is effective, I would not
try it. Unless, of course, I had no
other choice. Perhaps it would work.
In
the meantime, there are medications that are tailored to treat Dravet
Syndrome: topiramate (Topamax), clobazam
(Onfi, Frisium, Urbanyl), clonazepam (Klonopin, Rivotril), leviteracetam
(Keppra), and valproic acid (Depakote, Depakene, Epilim, Epival).
The
Ketogenic Diet and Vagus Nerve Stimulator are also possible options.
References
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