Open source protocol

[something]

I am wondering how many would be interested in founding an open source protocol for an alternative treatment of epilepsy.

Reading and studying the neurologist behavioral therapy to then build a protocole for a self administrated therapy based on it.

Studying neurofeedback protocols used for epilepsy and then build one for a self administrated. It could be based on the OpenEEG project. (the ModularEEG)

The perassembled modules are available here: (removed link, seems I am not allowed as a new user)

The softwares we'd use would be mostly open source and free, from the Open EEG project: (removed link, seems I am not allowed as a new user)

Then finally working of special diets not too restrictive which would be used to help control seizures and prevent brain atrophy (While Fish oil, Vitamin E etc. would not necessarly prevent seizure they are known to prevent brain damage by reducing oxydative stress and prevent brain atrophy).

Anyone interested?

 

[RobinN]

I am not really sure what you are suggesting.
I am personally very happy with our Neurofeedback Institute. Yes it is expensive, and I understand your wanting to cut out the middleman, however, I would no more want to administer this to my daughter than step into a swamp with alligators (sorry that is the first thing that came to mind). I feel very blessed to have one of the pioneers of neurofeedback with 30 yrs (or more) experience, work with my daughter.

From what I understand, you can truly mismanage this therapy. For me, that isn't even something I want to consider.

As far as nutritional choices, I think that is very individualized. We have links to the majority of the diets, and it if for each person to make those choices based on needs, financial situation, as well as discipline and determination.

Again, I am not fully understanding what you are suggesting. I do believe when you are first thrown into the world of seizure disorders it is mind boggling, and a workbook of sorts would be great , with suggested options.

 

[speber]

I'm open to hearing more, but...

I definitely have the same concerns as RobinN.
:twocents:

 

[brain]

It's been posted and discussed before
multiple times in earlier postings/threads on
topics varies from "in home" to "do-it-yourself"
kits. To sum it up - many are dangerous;
especially when it's in the hands of untrained
and unsupervised (as well as no medical back-
ground in either medical or electronical technology)
to some which are leaving question marks
that hovers over one's heads like this
:huh:
and leaving the safety factor and issues.

None the wiser would be best that a Trained
Personnel with the Doctor's Supervision or
rather the Medical Doctor handling these types
of equipment. Personally, from my own opinion,
I just do not feel it's safe for the "General Public
Usage" - the Modular EEG that is. There are
many units of all various makes and models out
there now, but many of them are actually for
research purposes for scientific purposes such
as for rats, rodents, et cetera - and not really
for humans although the push is on - ahead of
the game for as you've implied - "self-administered"
for human beings.

No - I do not believe this is safe at the moment
and I do not encourage such. If such were
available and encouraged, they would have been
available already through Medical Services approved
by AMA (American Medical Association) which would
require a Physician's Script, along with instructions,
training, et cetera.

Think of the TENS system - which once was
reserved for Physical Therapy only, can now be
available for General Public via Physician's Script
only; but the Patient has to undergo training and
follow strict orders - and they are frequently rented
out (not owned). I had a TENS system, and I had
to undergo 2 weeks training to use this on myself
to deliver electrical impulses from the accident
injuries sustained way back in 1988, and this was
rented out.

Therefore - I can disclose to a degree and to a
point from this angle. That I will not approve or
permit nor support "Homemade", "Non-Approved
AMA", or "Unsupervised" or anything type kits or
regardless of what one implies. Trust me, I have
access to the FDA and I DO CHECK to see if such
Units, Models, and the like are approved or not!

AS OF THIS DATE - NO unit, model, make, or any
type have been approved for home use!