Hi to all...

[greenwar]

Hi,
My son Kyle has had E for over two years now. He's age 12 and has full blown tonic/clonic's about twice monthly. He's tried nearly every med on the market with limited success. He is currently taking Lamictal (500mg/day) and Keppra (1500mg/day). He's not a candidate for sugery as no one can locate an exact focus, and he doesn't want the VNS although our Neuro is constantly trying to sway us in that direction. We (his Mom and I) are constantly looking for suggestions. Schoolmates are really giving him a hard time. No one wants to be his friend etc. Middle school really sucked and hasn't changed much since we were there. Just wanted to say hello ! Thanks, Randy.

 

[POSITIVEPERSON]

Hi welcome to the board. Have you thought about the gard diet ? Or Homeopathy? I use
both and am off all my meds. The reason I use both is because I took 39 yrs to switch to homeopathy and the homeopathy Drs said they couldn't get me off all the meds because I waited so long. Its better to go see them when your young and just diagnosed.

Have any questions feel free to ask.

Riva

 

[Bernard]

Hi Randy, welcome to the forum. :hello:

There was a recent article on drug resistant epilepsy that announced the results of a study showing that roughly 1/5 of epilepsy patients who had tried and failed multiple drugs managed to find a good measure of seizure control if they kept trying new drugs.

That said, I would highly recommend you look into one of the seizure control diets (ketogenic, modified atkins, low glycemic index [LGID]) or EEG neurofeedback. Both the diets and neurofeedback have a more impressive success rate for the so called "intractable" cases of epilepsy.

There are also reports (in forums on the interenet) of people using the GARD diet and homeopathy like Riva is using with good results, but there aren't any recognized medical studies on them that I can find.

 

[execwife2002]

Hi Randy,
My son also as of now isn't a candidate for surgery. He had a MEG done this summer in Detroit at the Henry Ford Hospital. They were unable to locate the focal point of his seizures. My son is 19 and has had seizures (any where when he was younger every 6 weeks to one point where he went seizure free on meds for 2 1/2 years. Then 4 years ago they started all over again. Dr. tells us its because his brain was still developing. Our new Dr. that we've been with for 1.3 years put him on a program where he aggressively tried different meds. None of them worked. However now at 19 he's been 2 1/2 months seizure free. We recently (6-8 wks ago) cut out caffeine, aspartane, splenda, and had him start taking magnesium at night along with his a.m./p.m. meds. (Lyrica 1000mg, Depakote 1000mg, and Topamax 800mg) Those doses are split up both times he takes them. I am wondering when the brain actually is approx. fully developed??we will be going for another MEG in the next few months. My son has been fortunate to have wonderful friends.He wears dog tags in case of an emergency and carries a med. card in his wallet.He is our social atheletic child who won numerous awards sports wise while he was in High School. He gets accomodations in school at the community collge he just started. Driving is a major issue in our home for him. Anger, frustration, mood swings, depression (shall I go on) are our biggest obstacles that as parents we have to deal with. My son is still trying to figure it all out. One thing for sure is as frustrated as he is, he continues to go out and make friends. He has learned to have greater understanding and compassion for others since the epilepsy entered his life. Continue to support your son so he will continue o grow self-esteem wise and self-confidence. The true friends are there he will find them.

 

[execwife2002]

Riva,
Would you please expand on what the Gard diet is??
Marian

 

[POSITIVEPERSON]

Sure, I got orginally from brainchat, dogtor J, I tried it and dropped it cause I wasn't ready. When I totally ran out of meds I looked at his posting again and retried and now have no problems. You need to be ready and want to do it.
FOODS RICH IN GLUTAMATE AND ASPARATE
foods to avoid:
grains: wheat ,barley and oats ,corn and rice
dairy products: all cows milk
beans:soy ,pinto, lima,navy, lentils
seeds:sunflower,pumpkin
peanuts:cashews,pistachios and almonds (7 almonds a day allowed)
diet drinks: asparate/nutrasweet
prepared foods or soups :70% have MSG
meats : but your allowed normal servings of it BUT rabbit and turkey are high in
glutamate and asparate LAMB IS LOW
FOODS LOW IN GLUTAMATE AND ASPARATE
FRUITS
VEGETABLES
POTATOES
LAMB AND EGGS
TREE NUTS (PECANS,WALNUTS MACADAMIS

WEB SITE:http://dogtorj.tripod.com/id31.html
THE WEBSITE WILL EXPLAIN WHY YOU DROP AND WHAT IT DOES TO YOU. WHEN I CHANGED MY DIET, MY STOMACH FELT SOOOOO MUCH BETTER. I WAS HAVING STOMACH PAIN AND DIDN'T KNOW WHY?
Stacy told me she lost too much weight on this, I am chef by trianing and work. So I am juggling the food.Plus I am overweight because I have a under active thyroid . Went toxic too many times,posioned myself. So losing weight at this point is not a problem its a blessing!!!!!!!

Hope this helps !!!!!!!

Riva

 

[Bernard]

GARD diet

 

[brain]

:hello: and Good Morning Randy!

And I've been on pretty much similar
what the "Gard" diet is; and what Riva
posted below, unfortunately, I'm allergic
to half of the stuff or more which was
triggering Acute Classic Migraines.

What was so interesting was: I do not
drink alcohol, and yet: they gave me
Red Wine (trigger factor) and go figure,
and those who have acute classics are
also sensitive or allergic to red wines!