Anyone perform NFK on Dravet's Syndrome?

[Guest guest]

Hi everyone,

I was just approached by my clinic director to see if NFK could help an 8 year

old with Dravet's Syndrome. Here is the definition:

Dravet syndrome, also called severe myoclonic epilepsy of infancy (SMEI), is a

severe form of epilepsy. It appears during the first year of life with frequent

febrile seizures – fever-related seizures that, by definition, are rare beyond

age 5. Later, other types of seizures typically arise, including myoclonus

(involuntary muscle spasms). Status epilepticus – a state of continuous seizure

requiring emergency medical care – also may occur. Children with Dravet

syndrome typically experience poor development of language and motor skills,

hyperactivity, and difficulty relating to others.

In 30 to 80 percent of cases, Dravet syndrome is caused by defects in a gene

required for the proper function of brain cells.

Here's what it states regarding treatment and prognosis:

Is there any treatment?

Seizures in Dravet syndrome are difficult to control, but can be reduced by

anticonvulsant drugs. A ketogenic diet, high in fats and low in carbohydrates,

also may be beneficial.

What is the prognosis?

As children with Dravet syndrome get older, their decline in cognitive function

stabilizes, and in many, it improves slightly. However, most teenagers with

Dravet syndrome are dependent on caregivers. The degree of cognitive impairment

appears to correlate with the frequency of seizures.

Sadly, in this case, since stress brings on seizures, and because this child

loses cognitive ability with each seizure, the parents are at a loss on

disciplining her as saying " no " to her could bring on a seizure (she will throw

a tantrum).

This is a rare condition and as much as I would like to see what we could do to

help this child, I'm also apprehensive because every time she has a seizure, she

loses a bit more cognitive ability.

Has anyone worked with someone with this condition? And/or, is this a case

where NFK should at least be tried or not at all? By the way, no medication has

been proven effective for this child. I don't know if they've tried the diet.

I will post this to another list as well. Thanks for any help!!

Pam Bilodeau