hello /epilepsy sufferers please/measles virus

January 20, 2006

Hello,

I have been encouraged to join here to pick up information. I have

a son who may have gotten a form of epilepsy which is not under

control and well, it makes hoping for any kind of independence in

his future slim. He is on a lot of meds and also went through a

rough steroid treatment last year to calm his brain waves down. I

will cut to the chase, it is probable he has this either due to the

MMR vaccine or that it is genetic and has something to do with my

autoimmune diseases. I believe it is the MMR and the last neuro we

had felt it was possible he had the measles virus alive in the

brain. There is differences of opinion on how to determine that (

brain biopsy, spinal tap), but our dr - then- told us the treatment

was steroids, so why put him through it when he was going to do

steroids anyhow? So, the steroid treatment helped, but was not as

successful as he would have liked. SO, I went back to my epilepsy

cured group and am focusing on this idea he may have the measles

virus. Has anyone here used naltrexone for epilepsy and has it

helped? Anyone here think their child had encephalitis which led to

epilepsy and tried this? Am I understanding this correctly that

Naltrexone might suppress the measles virus in his brain? Pardon my

ignorance!! I am just learning about this and am a bit overwhelmed

at the moment with lots and lots of good info. Trying to check it

all out. Thank you!!

Blessings!

joanie

January 20, 2006

>

> Hello,

> I have been encouraged to join here to pick up information. I have

> a son who may have gotten a form of epilepsy which is not under

> control and well, it makes hoping for any kind of independence in

> his future slim. He is on a lot of meds and also went through a

> rough steroid treatment last year to calm his brain waves down. I

> will cut to the chase, it is probable he has this either due to the

> MMR vaccine or that it is genetic and has something to do with my

> autoimmune diseases. I believe it is the MMR and the last neuro we

> had felt it was possible he had the measles virus alive in the

> brain. There is differences of opinion on how to determine that (

> brain biopsy, spinal tap), but our dr - then- told us the treatment

> was steroids, so why put him through it when he was going to do

> steroids anyhow? So, the steroid treatment helped, but was not as

> successful as he would have liked. SO, I went back to my epilepsy

> cured group and am focusing on this idea he may have the measles

> virus. Has anyone here used naltrexone for epilepsy and has it

> helped? Anyone here think their child had encephalitis which led to

> epilepsy and tried this? Am I understanding this correctly that

> Naltrexone might suppress the measles virus in his brain? Pardon my

> ignorance!! I am just learning about this and am a bit overwhelmed

> at the moment with lots and lots of good info. Trying to check it

> all out. Thank you!!

>

> Blessings!

>

> joanie

>

========

Hope this info helps.

Exerpt taken from the link I'm providing below.

Epilepsy, which stems from erratic surges in the brain's electrical rhythms,

affects some 2.5 million people in the United States. In cases where medication

won't help, seizures can batter the brain so frequently that normal life becomes

impossible. So why don't all epileptics try the ketogenic diet? Why haven't more

people heard about it?

Developed at Hopkins and the Mayo Clinic in Minnesota 70 years ago, at one time

the ketogenic diet was the only alternative to the handful of seizure

medications available.

It started to fall by the wayside in the 1940s and 1950s, however, when new

drugs came on the market.

At Hopkins, though, the ketogenic diet remained an option, although one

exercised only occasionally. Freeman, who took over pediatric neurology in 1969,

together with dietitian Millicent , then director of s Hopkins

Hospital's Nutrition Clinic, administered the diet to only 12 to 18 patients

each year.

Then, last fall, NBC's Dateline aired a segment on the diet, and Freeman's phone

hasn't stopped ringing since.

Neurologists from around the country are seeking him out for advice on the diet,

and parents are asking how to get their children into one of the dozen programs

that administer it.

At the moment, Freeman stresses, the ketogenic diet is being used " to treat the

worst of the worst. Our criteria are that children are having at least three

seizures a week and continue to have seizures despite using medication

appropriately. "

s Hopkins Magazine - April 1995 Issue

http://www.jhu.edu/~jhumag/495web/fat.html

LDN could still be used for the possible autoimmune disease along with the diet

for epilepsy.

January 20, 2006

In a message dated 1/20/2006 6:56:27 AM Eastern Standard Time, bjwilson@... writes:

The diet would probably be helpful now, but it is horrid to have to take away more pleasure from a kid who has so little. His current neuro, at Riley Hospital in Indianapolis, is against doing it. They want to put in the vagal nerve stimulator, which sends impulses to stop seizures. One out of 3 will get reductions in seizures, but we are far from ready to commit to it. Thank you for your suggestions.Blessings!Joanie

Joanie

Can you give him LOTS of fish oil and virgin coconut oil and limit junk carbs in his diet as a compromise?

And, don't forget the Magnesium and vitamin B6

mjh"The Basil Book"http://foxhillfarm.us/FireBasil/

January 20, 2006

Hello ,

, my son, is now 15 and it is very difficult to do the Keto

diet at this stage. Nearly 3 yrs ago I battled our neurologist to

DO the diet - he was not an advocate - and he finally said ok.

Then, the day before he was to be admitted to the hospital to start

it, and after spending a lot of time working on diet ideas and

keeping logs for the dietician, our insurance co. refused to pay on

the basis it was experimental. We lost 2 appeals and neither the

dr. or the dietician would cooperate with me after that - I asked to

pay for the induction out of my own pocket. So, I ended up putting

him on Atkins, which even Hopkins feels is showing a lot of

promise. Like with meds, it helped for a while then stopped. He

was on the SCD diet also with the same results. By this time his

brain was in a terrible state and seizures were violent and he could

not even close his eyes to sleep without having them. We found a

dr. in Chicago who dealt with these types of epilepsy ( the average

neuro does not know how to deal with it, but getting them to admit

it is impossible.) and he did a steroid treatment which helped. He

said the diet, nor any other thing, would have helped at that

point. We spent a lot of money going to this dr in Chicago for 17

months and a therapist in Calgary Canada and I haven't got the money

to do a lot of other things currently. But, God will show the way.

The diet would probably be helpful now, but it is horrid to have to

take away more pleasure from a kid who has so little. His current

neuro, at Riley Hospital in Indianapolis, is against doing it. They

want to put in the vagal nerve stimulator, which sends impulses to

stop seizures. One out of 3 will get reductions in seizures, but we

are far from ready to commit to it. Thank you for your suggestions.

Blessings!

Joanie

> >

> > Hello,

> > I have been encouraged to join here to pick up information. I

have

> > a son who may have gotten a form of epilepsy which is not under

> > control and well, it makes hoping for any kind of independence

in

> > his future slim. He is on a lot of meds and also went through a

> > rough steroid treatment last year to calm his brain waves down.

I

> > will cut to the chase, it is probable he has this either due to

the

> > MMR vaccine or that it is genetic and has something to do with

my

> > autoimmune diseases. I believe it is the MMR and the last neuro

we

> > had felt it was possible he had the measles virus alive in the

> > brain. There is differences of opinion on how to determine that

(

> > brain biopsy, spinal tap), but our dr - then- told us the

treatment

> > was steroids, so why put him through it when he was going to do

> > steroids anyhow? So, the steroid treatment helped, but was not

as

> > successful as he would have liked. SO, I went back to my

epilepsy

> > cured group and am focusing on this idea he may have the measles

> > virus. Has anyone here used naltrexone for epilepsy and has it

> > helped? Anyone here think their child had encephalitis which

led to

> > epilepsy and tried this? Am I understanding this correctly that

> > Naltrexone might suppress the measles virus in his brain?

Pardon my

> > ignorance!! I am just learning about this and am a bit

overwhelmed

> > at the moment with lots and lots of good info. Trying to check

it

> > all out. Thank you!!

> >

> > Blessings!

> >

> > joanie

> >

> ========

>

> Hope this info helps.

>

> Exerpt taken from the link I'm providing below.

>

> Epilepsy, which stems from erratic surges in the brain's

electrical rhythms, affects some 2.5 million people in the United

States. In cases where medication won't help, seizures can batter

the brain so frequently that normal life becomes impossible. So why

don't all epileptics try the ketogenic diet? Why haven't more people

heard about it?

>

> Developed at Hopkins and the Mayo Clinic in Minnesota 70 years

ago, at one time the ketogenic diet was the only alternative to the

handful of seizure medications available.

>

> It started to fall by the wayside in the 1940s and 1950s, however,

when new drugs came on the market.

>

> At Hopkins, though, the ketogenic diet remained an option,

although one exercised only occasionally. Freeman, who took over

pediatric neurology in 1969, together with dietitian Millicent

, then director of s Hopkins Hospital's Nutrition Clinic,

administered the diet to only 12 to 18 patients each year.

>

> Then, last fall, NBC's Dateline aired a segment on the diet, and

Freeman's phone hasn't stopped ringing since.

>

> Neurologists from around the country are seeking him out for

advice on the diet, and parents are asking how to get their children

into one of the dozen programs that administer it.

>

> At the moment, Freeman stresses, the ketogenic diet is being

used " to treat the worst of the worst. Our criteria are that

children are having at least three seizures a week and continue to

have seizures despite using medication appropriately. "

>

> s Hopkins Magazine - April 1995 Issue

> http://www.jhu.edu/~jhumag/495web/fat.html

>

> LDN could still be used for the possible autoimmune disease along

with the diet for epilepsy.

>

January 20, 2006

Joanie,

I would strongly encourage you to look at gluten and casein free diet

or an elimination diet to try and define seizure triggers. Our now 21

year old began a serious migraine pattern 6-8 weeks after boosters of

dt and polio when she was 6. The migraine pattern became more

frequent over several years with vomiting til dry heaves, light and

noise sensitivity, inability to function etc. When she was 9, onset

of seizures began and the migraines disappeared. Her seizures became

increasingly frequent(sometimes a couple dozen obvious ones per day

and some not so obvious-just a little odd cough and/or period of

inattention) and not well controlled by meds. It was her great

response to the gfcf diet that brought me to the toxic metal

connection. In summer 2000, she went gfcf `cold turkey'. This

provoked a 3 day onslaught of seizures that looked like DTs. By day 4

they were tapering and gone by the end of day 5. We can relate almost

every seizure episode since then to a dietary infraction. They occur

8-12 hours after ingestion and generally continue for 24 hours. The

number seems to depend on how much of an offending item she has

eaten. (and no we don't feed her these things but she plugs machines

at school etc). Other foods, additives, dyes put her in what I call a

pre-seizure mode-unreasonable, aggressive, etc. so I am pretty rigid

about what she puts in her mouth. We were Feingold and pretty low

oxalate before I ever knew what those were. We've been able to

reduce her seizure med to a fraction of the formal level. I still

keep her on a minimal bedtime dose, but hope to have her completely

weaned by mid-year. She was on the ketogenic diet for about 10 mos

when she was 12. It did help with seizure control but also caused her

to develop a tourette's pattern and self injury., both of which

disappeared when we stopped the ketogenic diet. Gfcfsf is a breeze

compared to ketogenic! and much more family friendly. When we finally

were able to get fatty acids tested, she was low on Omega 6's. If you

suspect measles as the culprit, there is a high dose vitamin A

protocol that has helped many. Have you done any hair testing to see

what may be toxicity issues? I'm sorry as I know how difficult the

seizure road is. B.