Pushing for neurofeedback - discussion

Dutch mom

Ketogenic Smile
Moderator
Messages
781
Reaction score
0
Points
0
Thanx for your mail Bernard. I'll write to AAN and will compare neurofeedback as an alternative treatment with the ketogenic diet, wich hasn't been a valid option to treat childhood epilepsy for many years, in spite of proven efficiency long before modern AEDs even excisted.
Awareness of the ketogenic diet being a very effective alternative treatment has improved a lot since in the eighties Charlie Abrahams story became famous thanks to the film First do no Harm. Allthough no first line choice (yet), nowadays the ketogenic diet is an accepted alternative for intractable childhood epilepsy (especially the med resistant Lennox Gastaut syndrome.)
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,631
Reaction score
99
Points
213
Thanks DM! Even though the AAN is regional to the USA, I think many times what happens here spills over to Europe and vice versa. It benefits everyone to add their voice.
 
Messages
1,914
Reaction score
1
Points
0
I personally think the letter was awsome. But I think there are a few Dr.s that would like to see it too at Harborview. Maybe about 4 of them. Would you mind Bernard?There are some old time epileptologist and some incoming very open minded Dr.s that I met during my stay.I think they would be very interested since that is the way I want to take my son.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,631
Reaction score
99
Points
213
I posted the letter here on the internet for all to see. By all means copy and paste it to whoever you like (or send them a link to the post here). The more people talking about it the better as far as I'm concerned.
 

brain

Account Closed
Inactive
Messages
3,450
Reaction score
0
Points
0
<--- is looking for the AAN article on
the Neurofeedback -- *laughing*

If I can find it - I will scan it ...
and email it to Bernard so he can
review it, that is if I can find it..

But I PROMISE you this, I am going
to scan and send the AAN
FREE SUBBY so y'all can send it
off and get your free subscriptions!

:D
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Hi Stilldancing

I think you have a great idea!! Let us tell all of the neurologists we know and that will help get the word out. Is it possible that we can get it on the radio? How about a news TV station? I am not daydreaming, a lot of news about epilepsy has gotten out that way.

Thank you Bernard, I sent the e-mail off. Exposure of any kind can only help. Even if it is not in there. Ask the neuro feed back experts, they would be thrilled to get exposure. They can probably get it into places that we cannot.
 
Messages
1,914
Reaction score
1
Points
0
I am still working on Oprah and UW/ harborview has a station and that would be a great idea to get it to them.They also have a tv station and and epi you can watch when you are in the hospital.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
stilldancing

I am glad you are pushing it. I am going to ask the major hospitals in my area and a local TV stationl. The hospitals are UCLA,UCSF and Stanford. I am going to try some major newspapers in my area as well. I will let you know what happens.The hospitals do research and I am going to ask them to get them on TV stations and newspapers.

Let me know what happens with Opra and UW/harborview.
 

RobinN

Super Mom
Messages
7,834
Reaction score
0
Points
161
There are CWE stickers and magnets in the CWE store, for the ones that you really like
 

RobinN

Super Mom
Messages
7,834
Reaction score
0
Points
161
I am thinking this one needs to be informed:

Treatments for Epilepsy
Posted Aug 24 08 4:41pm

Here is a list of treatments and procedures that are commonly used to treat Epilepsy:
Anticonvulsant medications
Avoid alcohol
Avoid driving
Brain Surgery
Carbamazepine
Clonazepam
Corpus Callosotomy
Epilepsy Surgery
Heat
Ice Pack
Lifestyle changes
Lobectomy
Methoin
Nerve Blocks
Pediatric Epilepsy Surgery
Phenytoin
Primidone
Psychotherapy
Sodium valproate
Surgery
Vagus Nerve Stimulation

These are just some of the treatments and procedures that are used to treat Epilepsy.
You can connect with experts and other people who have Epilepsy in the Wellsphere communities.
If you're interested in finding more information, tips, news and videos about Epilepsy, go to the Epilepsy WellPage or the Treatments for Epilepsy WellPage.
http://www.wellsphere.com/epilepsy-seizures-article/treatments-for-epilepsy/116353
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,631
Reaction score
99
Points
213
Thanks Robin. I joined WellSphere and left a comment on that page. I also mentioned the AAN letter in their Epilepsy forum.
 

RobinN

Super Mom
Messages
7,834
Reaction score
0
Points
161
Alternative Medicine is Going Mainstream

Alternative medicine is going mainstream, and top-notch hospitals are embracing various forms of alternative and complementary medicine. According to the American Hospital Association, more than one-third of U.S. hospitals offer at least one type of complementary medicine, which includes acupuncture, homeopathy, chiropractic, nutrition, massage therapy and herbal medicine. For example, the prestigious Memorial Sloan-Kettering Cancer Center offers acupuncture for relief of nausea from surgery or chemotherapy. The growing field is even referred to by a new name — CAM — an acronym for complementary alternative medicine.

Many of the CAM therapies were considered little better than voodoo by doctors until recently when several complementary and alternative therapies were scientifically found to be medically effective and cost effective as well.

In an economy where overall health costs continue to rise even though millions of people are losing their jobs and health insurance, CAM, with its emphasis on leading healthier lives, could help make Americans healthier and reduce the necessity for expensive, traditional medical treatment.

The risks of developing health conditions that drain American pocketbooks, such as heart disease, obesity, diabetes, and breast cancer, can be dramatically lowered by following a healthy diet and lifestyle changes, such as exercising and quitting smoking.

Recent studies have found that aspects of CAM such as plant-based diets and meditation may halt, and perhaps even reverse, such debilitating ailments as diabetes, heart disease, obesity and other chronic conditions. Genes associated with deadly diseases were “turned off” with alternative therapies while protective genes were “turned on” — all within a matter of months.

Currently, only a few forms of CAM are covered by health insurance. Proponents are urging the new administration to include alternative forms of medicine in new health plans and proposals.
Newsmax Health Newsletter 1/12/09
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,631
Reaction score
99
Points
213
I am hoping to move neurofeedback out of the CAM category and into the mainstream.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
That would be great if it went mainstream!! A friend of mine told me that I wrote my letter the wrong way. I am going to write it the right way. I am a firm believer in neurofeedback.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Hi Robin

I have been following Bernard's information on Neurofeedback. I have learned a lot from him.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,631
Reaction score
99
Points
213
We'll see about that. ;)

I'm concentrating on the USA right now.
 
Top