New member

[Guest guest]

Why do you have a fever? think of that one first? An illness. So is

epilepsy a disease process...as if the body intuitively knows, a virus,

pathogen, or mixed up response is happening? That's why I say, stealth

viruses are culprit folks. Think also the gut brain interactions, what is

the missing things that we may have not thought of. Vagul nerves go all the

way up into the brain, and are often messed with defibulators of sorts to

stop seizures? If your gut ain't right, ain't nothin right honey! LOL.

So what could be in the gut that causes a seizure? Viruses, inflammed

peyers patches, liver dysfunction and bile outflow? could their be a bezoir

or blockage? Twist them knickers and you get a whamo seizures right?

RIGHT. Allergies to everything, most certainly, becuase their is leaky gut,

lack of enzymes and appropriate epelethial " sugars " , and whamo, seizures

again. Put a little this and that, a little mercury , heavy metals, and

some mineral stores that are screwed, whamo seizures. Allergies to opiods

and glutens and casseins, whamo seizure. Open up the BBB and you get more

seizures...how does that happen? Can you say FLOURIDE? Can you say even

CERTIAIN MEDICATIONS. Can you say HERPES viruses, ala stealth? Can you

say, what do you give little kids when they are small? Vaccines with known

heavy metals, phenols, viruses, contaminants, then a drop or two of liquid

flouride to complete the job? Ok, not talking about brain injuries, or bad

birthing processes here, just the obvious things like that. Then we go to

metabolic. What causes a metabolic collapse? What is the KID absorbing,

how are the pathways? ARe the amino acids off? Are the fatty acids off?

What causes sometimes those to go off? You got it, vaccines. The stool

problems are fat malapsorbtion problems, and whala, theres another clue.

Enzymes. What's in our foods nowadays? Lack of enzymes. These are

obvious things, and there are numerous not so obvious, but somethings that

at least has helped in my journey to get my sons seizures undercontrol.

Kathy

Re: [ ] New Member

> Kareemah, cold hands and feet I am sure does not just mean anemia,

improper

> blood circulation due to a number of reasons should be considered, which

> should be mentioned to the doctor (but that does not garantee that you

will

> receive a proper respons) Sorry I am kind of down on doctors these days.

> You know, a couple of weeks back I remember a lady, in our group,

mentioning

> that her child also had circulatory problems. It is just peculiar that two

> children with seizure disorders have circulatory problems, I wonder are

there

> more?

> When I mentioned body temp I did not mean elevated temperature. My

daughter's

> temp has been running 95-96 degrees for the last ten months (ever since

the

> seizures started) and I was just curious did anyone else have this

problem.

> Basically what I have been trying to do is collect like symptoms from

other

> children with seizures disorders just to see if we can get to the bottom

of

> the this. In my opinion, there has to be a cause, my goal is to find the

> cause and help other parents so they don't have to go through (excuse me)

the

> hell that I have been through these last ten months. I am sure you guys

can

> relate to this.

> What I would really like for everyone to do is write down symptoms that

your

> child is having. And try to go back to the beginning of the seizures, if

you

> can, to see if you can pinpoint two or three possibilities that may have

> onset the seizures. I have done this and I came up with two things 1) we

took

> a trip to Texas 2) got fillings put into her teeth (Amalgams

> containing Mercury).

> It just makes sense to me to do this, we are a group, we all have children

> who suffer from a seizure disorder, so let's compare and see what we can

come

> up with. Please try not to leave out anything, no matter how small or

> irrelevant the symptom seems.

> I'll start,

> 's symptoms are:

> Constant stomach aches

> A rash of unknown origin

> Fatty stools

> Bloating

> distented stomach

> Low body temp usually 95-96 degrees

> Irritability (probably due to meds)

> And of course the seizures

>

>

> Thanks, Tracey

>

>

>

[Guest guest]

Kareemah,

Did your son receive the fillings right before the seizures started and are

they the silver amalgams?

Tracey

[Guest guest]

No, actually when I started to change his diet he was getting a clean bill of

health at the dentist. He hasn't had any new fillings in about two years. I

am guessing the last fillings he got was when he was about four. Which was

way before he started getting his seizures. Also I am puzzled because when

he was younger there was far more gluten in his diet than there was once his

seizures started. Raw milk products were added to his diet, but this

benefited him so much as far as him not getting cavities. Prior to this

addition he was never allowed any dairy, except for an occassional pizza,

which was rare.

I started followong mostly the Weston Price Diet which showed great

improvements for us all, especially Musa who was a very sickly little boy.

He caught every cold that blew our way and would get miserably sick. He even

had pneumonia once, I think when he was three or four. He now doesn't get

sick as frequently, and has been having no cavities for at least 11/2 years.

And when he does get sick it's not as bad as it used to be. He used to vomit

and have a stuffy head and just be miserable.

It is hard for me to try diets because since he doesn't have seizures

that often, it would be about three of four months before I could be sure

that I have pinpointed the problem.

Thanks again for the leads,

Kareemah

[Guest guest]

Welcome ! and Theresa, I too am a Theresa aka Tree :) Glad you found this sight ! It's a really super place for sharing what you know, asking unanswered questions, venting, and simply bonding. I'm a veteran JRAer I was diagnosed finally at age 8 but that was after 5 years of wondering from doctor to doctor with no good results.I hope your daughter is doing well. Do you have others with JRA close by that she can hang out with or at least penpal or email?? I'd consider having her penpal at least.. I grew up all my life and never knew anyone else with JRA until I was 36. I now know what I missed by not having anyone else to share or compare myself too.Don't get me wrong , I lead a full life, I have a wonderfully loving and supportive family , I'm an artist, I have a great son 14 and hubby of 19 yrs. But the road I've walked I walked alone, until I met Donna Fox who you will also see posting in this group. I live in Kentucky and have helped start a support group for children and young adults called FACES. (Facing Arthritis with Compassion, Encouragement and Support) I never knew I was missing something in my life really until I found another like myselF. I know mine and Donna's stories are different in as many ways as they are the same but I know she walks on the same path. So now there are so many words unspoken...but understood! It's been a long road and I sing the praises of the few doc's out their that help me to manage this life. But your right , their are alot that have no clue and wouldn't it be nice if they'd simply say that and allow you to move on ..... but we all know this isn't a perfect world or JRA wouldn't exist at all. Well I've spouted enough :) Good luck Theresa & :):)Tree:):):) Theresa Sappenfield FACES Young Adult & Children's Support System Facing Arthritis with Compassion, Encouragement and Support Treesap0@... 502-589-6620 ext.106 FACES Young Adult & Children’s support system Facing Arthritis with Compassion, Encouragement and Support Treesap0@... 502-589-6620,ext.106 new member Hi everyone, I just found your site and am so very pleased to be ableto join. I am a mom with a 17 year old daughter, Theresa who hassystemic JRA diagnosed at 3 1/2. It has been and continues to bequitea journey. Our Rheumy told us she has a tough luck case, one of the10% with crippling and long lasting effects. I truly empathize withall of you and your kids who have just been diagnosed... those aredays I will never forget!! Please know things smooth out and eventhough it remains a continual challenge both medically and emotionallywith all the wisdom aquired you really do come to know quite a bit,sometimes more than the docs.I am just beginning to read the posts and get a feel for who is outthere. Thanks again,

[Guest guest]

Hello ....My daughter who just turned 17 was diagnosed at the age of 4

1/2 with polyarticular jra. Old arthur sure has taken his toll on her

also..she has had both knees and hips replaced. There is a website called

JRAWorld.org...for children and adults who deal with jra. They have

chatrooms and photo albums of different kids..maybe Theresa would be

interested or you in seeing it.

I was lucky to find this website..would of loved it..if it would of been

around back when Tabitha was diagnosed..even though i had family

support..wasn't the same. These people are wonderful on here..ask questions,

vent, or if you just want to chat about something..they are here..

Take care

(tab17..poly)

From: " alertx7 " <mjcs@...>

Reply-

Subject: new member

Date: Thu, 14 Mar 2002 18:14:06 -0000

Hi everyone, I just found your site and am so very pleased to be able

to join. I am a mom with a 17 year old daughter, Theresa who has

systemic JRA diagnosed at 3 1/2. It has been and continues to be

quite

a journey. Our Rheumy told us she has a tough luck case, one of the

10% with crippling and long lasting effects. I truly empathize with

all of you and your kids who have just been diagnosed... those are

days I will never forget!! Please know things smooth out and even

though it remains a continual challenge both medically and emotionally

with all the wisdom aquired you really do come to know quite a bit,

sometimes more than the docs.

I am just beginning to read the posts and get a feel for who is out

there. Thanks again,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

,

I was so glad to get your e-mail. Theresa is very isolated and lonely

with this JRA. She is wheelchair bound and 17 so that is a drag! She

barely manages to get to school and that is about all her body can deal

with. We are looking into getting all the adaptions so she can learn to

drive. Have you and Tab started looking into life after HS? Theresa will

need to have knees, hips etc replaced as well so please tell me about

that chapter!! Probably within a year. Thanks for your suggestions I am

very grateful, hope you and yours are doing well. and Theresa (sys

17)

karens tribe wrote:

>

> Hello ....My daughter who just turned 17 was diagnosed at the age

> of 4

> 1/2 with polyarticular jra. Old arthur sure has taken his toll on her

> also..she has had both knees and hips replaced. There is a website

> called

> JRAWorld.org...for children and adults who deal with jra. They have

> chatrooms and photo albums of different kids..maybe Theresa would be

> interested or you in seeing it.

> I was lucky to find this website..would of loved it..if it would of

> been

> around back when Tabitha was diagnosed..even though i had family

> support..wasn't the same. These people are wonderful on here..ask

> questions,

> vent, or if you just want to chat about something..they are here..

> Take care

> (tab17..poly)

>

> From: " alertx7 " <mjcs@...>

> Reply-

>

> Subject: new member

> Date: Thu, 14 Mar 2002 18:14:06 -0000

>

> Hi everyone, I just found your site and am so very pleased to be able

> to join. I am a mom with a 17 year old daughter, Theresa who has

> systemic JRA diagnosed at 3 1/2. It has been and continues to be

> quite

> a journey. Our Rheumy told us she has a tough luck case, one of the

> 10% with crippling and long lasting effects. I truly empathize with

> all of you and your kids who have just been diagnosed... those are

> days I will never forget!! Please know things smooth out and even

> though it remains a continual challenge both medically and emotionally

> with all the wisdom aquired you really do come to know quite a bit,

> sometimes more than the docs.

>

> I am just beginning to read the posts and get a feel for who is out

> there. Thanks again,

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp.

>

>

[Guest guest]

hows your daughter doing? if you want can email her and chat with

her

has been in the wheelchair before and the braces she is a 9th

grader high school and she is under the homebound program she is walking ok

right now the fatigue gets her she also has problems with writing but

reads alot

maybe they can talk about whats on their minds and you know girls love to

talk

melissa likes just about anything music boys lolol and looking forward to

her future

even with some road blocks wish these kids could really meet and see they

have others like them around i do keep in contact with the georgia

foundation

for events melissa can go to

let me know if your girl would like to shoot the breeze who knows they maybe

able to help each other

i have melissa under strict block so if i dont add the screen name no one can

instant message her or email her have to be that way since candy man thing

talk later

Robbin

[Guest guest]

Hi Robbin! just trying to get through these post before i get bumped

offline..lol.

I am worried about Tabitha..i haven't been in awhile..to me she just looks

like she is starting to lose her spurt of energy again. She had a pain in

her left hip yesterday..and it was bothering her alot after that..i hope it

is nothing wrong..since both of her hips are replacements..they turned out

great. Now if something goes wrong..someone will pay for it!

We are also on aol..

tabithas name is Kakasha16@...

mine is Srargem36@...

was suppose to be Stargem..but..had a typo when i created it..lol!oops!

Anyways I am sure Tabitha would like to chat with .

karen(tab17..poly)

From: Robbin40@...

Reply-

Subject: Re: new member

Date: Fri, 22 Mar 2002 10:00:12 EST

hows your daughter doing? if you want can email her and chat with

her

has been in the wheelchair before and the braces she is a 9th

grader high school and she is under the homebound program she is walking

ok

right now the fatigue gets her she also has problems with writing but

reads alot

maybe they can talk about whats on their minds and you know girls love to

talk

melissa likes just about anything music boys lolol and looking forward to

her future

even with some road blocks wish these kids could really meet and see they

have others like them around i do keep in contact with the georgia

foundation

for events melissa can go to

let me know if your girl would like to shoot the breeze who knows they

maybe

able to help each other

i have melissa under strict block so if i dont add the screen name no one

can

instant message her or email her have to be that way since candy man thing

talk later

Robbin

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hello ..As far as life after hs..Tabitha is determined like others to

live on her own..Driving well I brought it up to her and right now I can't

begin to teach her..We only have an extended van..which would be hard for

her to drive..I am looking for a car to buy..but money wise..still

looking..lol.

I was telling another one on this list about jra camp..it is so

awesome..I was amazed at the kids I met there when I took Tabitha and picked

her up. There was kids in wheelchairs and etc..they have docs. on

hand..totally amazing. It was only for a week but i am sure if it was all

summer Tabitha would of stayed. For me it was good to see other children who

have what Tabitha has..I had only met a couple of kids until Tabitha went to

camp. If you contact your local arthritis foundation, I am sure they can

help you in finding a camp near you. There was even a couple of kids who

came from other states there.

Anyways, Tabithas hips were done back in sept.of 2000..this is also when her

remicade was started.The hips were done within 2 wks of each other. Her left

knee was done back in 97 and her right one back in 98..now her right one is

in a locked position..another words..it is bent..we go in April to another

surgeon who will help us decide how to straighten it and get it going

properly. But since her hip surgery and knees..Tabitha is wheelchair free

unless we go where there is alot of walking involved..When she had a full

schedule last year I left it at school to be used in helping transport her

back and forth to classes. She only goes half a day this year because of

missing alot of days last year..but her and I have decided if she is ever

going to graduate next year will have to be a full schedule. She won't even

think of summer school..lol. Tabitha takes life and the future one day at a

time...she has friends at school but none call her to ask her for example to

go to the mall or spend the night..now she has gone to birthday parties..but

this doesn't seem to bother Tabitha..or if it does she doesn't say

anything..that is why I am glad she found camp!Her and her brother who is a

year younger than her..but way taller than her..go to the movies and

different places together..he is great..i know he will always look after

her.Oh they fight and argue just like any typical brother and

sister.lol..then i step in!

Anyways.Tabithas email is Kakasha16@... would enjoy chatting with

Tabitha.

Maybe your daughter can check out jraworld.com(the guy who heads it also has

jra) or arthritisight.com...good for the parents and family also.

well better end this..sorry to ramble..lol!

karen(tab17..poly)

From: " Stanton " <mjcs@...>

Reply-

Subject: Re: new member

Date: Thu, 21 Mar 2002 23:06:02 -0700

,

I was so glad to get your e-mail. Theresa is very isolated and lonely

with this JRA. She is wheelchair bound and 17 so that is a drag! She

barely manages to get to school and that is about all her body can deal

with. We are looking into getting all the adaptions so she can learn to

drive. Have you and Tab started looking into life after HS? Theresa will

need to have knees, hips etc replaced as well so please tell me about

that chapter!! Probably within a year. Thanks for your suggestions I am

very grateful, hope you and yours are doing well. and Theresa (sys

17)

karens tribe wrote:

>

> Hello ....My daughter who just turned 17 was diagnosed at the age

> of 4

> 1/2 with polyarticular jra. Old arthur sure has taken his toll on her

> also..she has had both knees and hips replaced. There is a website

> called

> JRAWorld.org...for children and adults who deal with jra. They have

> chatrooms and photo albums of different kids..maybe Theresa would be

> interested or you in seeing it.

> I was lucky to find this website..would of loved it..if it would of

> been

> around back when Tabitha was diagnosed..even though i had family

> support..wasn't the same. These people are wonderful on here..ask

> questions,

> vent, or if you just want to chat about something..they are here..

> Take care

> (tab17..poly)

>

> From: " alertx7 " <mjcs@...>

> Reply-

>

> Subject: new member

> Date: Thu, 14 Mar 2002 18:14:06 -0000

>

> Hi everyone, I just found your site and am so very pleased to be able

> to join. I am a mom with a 17 year old daughter, Theresa who has

> systemic JRA diagnosed at 3 1/2. It has been and continues to be

> quite

> a journey. Our Rheumy told us she has a tough luck case, one of the

> 10% with crippling and long lasting effects. I truly empathize with

> all of you and your kids who have just been diagnosed... those are

> days I will never forget!! Please know things smooth out and even

> though it remains a continual challenge both medically and emotionally

> with all the wisdom aquired you really do come to know quite a bit,

> sometimes more than the docs.

>

> I am just beginning to read the posts and get a feel for who is out

> there. Thanks again,

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp.

>

>

[Guest guest]

-

do you mean arthritisinsight.com? I can't find arthritisight.com.....or is

there another one? thanks, (Will, 22mos., pauci)

[Guest guest]

Sorry ..that is the one I meant..dang typos..!lol.

karen

From: laocme12@...

Reply-

Subject: Re: new member

Date: Sat, 23 Mar 2002 09:16:24 EST

-

do you mean arthritisinsight.com? I can't find arthritisight.com.....or is

there another one? thanks, (Will, 22mos., pauci)

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

-

You're getting double posts, and I'm missing posts. I just read two posts (attached to replies) that I never received in the first place!!!

Diane (, 2, pauci)

[Guest guest]

Geez...something wierd is going on.another old one..feels like I am entering

the twilight zone..lol!!!!!

From: " karens tribe " <nutsomom5@...>

Reply-

Subject: Re: new member

Date: Tue, 26 Mar 2002 00:02:40 -0500

Sorry ..that is the one I meant..dang typos..!lol.

karen

From: laocme12@...

Reply-

Subject: Re: new member

Date: Sat, 23 Mar 2002 09:16:24 EST

-

do you mean arthritisinsight.com? I can't find arthritisight.com.....or is

there another one? thanks, (Will, 22mos., pauci)

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Welcome Byran, another guy... all of a sudden we are getting a bunch of men

with graves, wonder why?

Let us know how your labs show, ok?

:)Pam B.

http://www.webmosaics.com/thyroid/

" Life is what happens when you are busy making other plans " - Lennon

[Guest guest]

Hi ,

And welcome to this group! You won't know your diagnosis for sure, until you get your lab results; however, you might have been having thyroid storms, which sent you to the ER. I had several of them prior to my diagnosis of Graves'. What I experienced was a huge, pounding thump in my heart (not just palpitations), then total complete drenching sweat down my body (I never sweat, used to run very cold), and then unbearable shortness of breath. I was so bad during this episode (I was out in the middle of the woods, camping), that when I returned home, I couldn't even walk up my driveway without getting winded. I thought I had had a heart attack. I had a few more of these, though not as bad as this first one, before my diagnosis. I believe I had been hypothyroid for quite a while before going hyper. My hair loss was extensive too. But unlike you, my libido went kaput with this first thyroid storm. I also went through menopause simultaneously. Hope this helps.

Arlene in California

New Member

Hello, I just joined the group. I'm 45 and I've been ill for several weeks now and very much suspect that it is Graves/Hyperthyroidism. I made a trip once to an ER and the doctor suggested more Thyroid tests, which I'll have on Wednesday afternoon. Some times have been unbearable, nearly sending back to the ER on a couple of occasions. Often this is the middle of the night. At first it was trembling and chills, but more recently it's heart racing and in pain. I awake to a sort of drowning/suffocating feeling and my chest hurts. My body temp goes both below and above average and lately I usually have night sweats. Yesterday I developed a small bruise looking patch on the back of my right hand and a patch of yellow skin on my front lower legs. My eyes have been a little itchy and a little blurry. I believe I might also have an increased libido. Although I've been eating a lot, I've lost about 12 pounds. Foods that seem to make me feel better are fruits, vegetables, grains and milk, and Sobe drinks that contain stuff like Chromium and Taurine. Anyway, I bet some of this sounds familiar to your group members, so I thought I'd hang out here and gather info as well as some sites I've been surfing. I think I found a link to here from ithyroid.com, which is a nice site. As bad as it sounds, I think I'd prefer Graves to many other diseases I comtemplated that I might have during my research. Looking forward to test results soon. --KaTman *********************************************************** Wonders in Aliceland: http://www.GlenBuxton.com Alice Group List: ACG *********************************************************** ________________________________________________________________Sent via the EV1 webmail system at mail.ev1.net

[Guest guest]

Hi ,

Welcome to the bulletin board. You're not alone and all the symptoms you

listed have been experienced by just about everyone here. Regarding your

eyes - you need to keep your eyes lubricated with PRESERVATIVE FREE eye

drops such as REFRESH. You can use as much of these eye drops as necessary.

It's typical that your eyes are blurry, dry, itchy. You may notice

sensitivity to sunlight, indoor lights, etc. Make sure you have a good pair

of sunglasses to wear outdoors. Get a baseline eye exam from a good

opthalomologist (MD) and whatever you do DO NOT GET RAI (radioactive

iodine) - it will render you hypo and your eyes may become considerably

worse which may result in serious eye surgery. Others will tell you the

same. Don't mean to scare you - you just need to educate yourself and keep

one step ahead of the doctors. This is one of the best bulletin boards

including Elaine 's website and ithyroid.com website. Keep in touch,

Mona

New Member

> Hello, I just joined the group. I'm 45 and I've been ill for

> several weeks now and very much suspect that it is

> Graves/Hyperthyroidism. I made a trip once to an ER and the doctor

> suggested more Thyroid tests, which I'll have on Wednesday

> afternoon.

>

> Some times have been unbearable, nearly sending back to the ER on

> a couple of occasions. Often this is the middle of the night. At

> first it was trembling and chills, but more recently it's heart

> racing and in pain. I awake to a sort of drowning/suffocating

> feeling and my chest hurts. My body temp goes both below and above

> average and lately I usually have night sweats. Yesterday I

> developed a small bruise looking patch on the back of my right

> hand and a patch of yellow skin on my front lower legs. My eyes

> have been a little itchy and a little blurry. I believe I might

> also have an increased libido. Although I've been eating a lot,

> I've lost about 12 pounds. Foods that seem to make me feel better

> are fruits, vegetables, grains and milk, and Sobe drinks that

> contain stuff like Chromium and Taurine.

>

> Anyway, I bet some of this sounds familiar to your group members,

> so I thought I'd hang out here and gather info as well as some

> sites I've been surfing. I think I found a link to here from

> ithyroid.com, which is a nice site.

>

> As bad as it sounds, I think I'd prefer Graves to many other

> diseases I comtemplated that I might have during my research.

> Looking forward to test results soon.

>

> --KaTman

>

> ***********************************************************

> Wonders in Aliceland: http://www.GlenBuxton.com

> Alice Group List: ACG

> ***********************************************************

>

>

> ________________________________________________________________

> Sent via the EV1 webmail system at mail.ev1.net

>

>

>

>

>

>

>

>

>

[Guest guest]

I have a very serious question. I have been reading where braces on children

with epilepsy is dangerous. Is that true? I have 2 nephews with epilepsy

whom are fixing to get braces in less that 4 months. I fear for thier

safety. They are 9 and 11. They are on anticonvulcient medication daily.

I am very pertective of them for I have epilepsy also and i dont want them to

suffer like i have in the past.

Please help me.

[Guest guest]

Yes rates are up, as is most complex immunonuerologica disorders, and yes,

pandemic in the last ten years..

Culprits?

My guess is

Mercury from vaccines

Aluminum from vaccines

Too much iron in diet, too much Hemachromatosis and Pyrolle disorders in

population

Pesticides and Chemicals

Viruses from Vaccines

Birthing procedures (www.childscreen.org see proposals and #1)

Toxic soup at workplace or home

Some are, some aren't, some are working on reducing, some are succesful with

supplmenets, and change of diet, mostly gluten and cassein, MSG free,

Salyciatates

SCD diet etc. Focus on Mitochondrial resucitation.

IN my HUMBLE humble, very humble opinion, best supplements, at least for my

kid?

IP-6 (to reduce iron in the brain, which causes seizures)

Reduce Mercury and Aluminum via Chelation, NDF, PCA-rx, EDTA with combo DMSA

and Alpha Lipoic Acid, Sweating, Excercise

B-6, Mag, Calcium, Zinc (more zinc)

CoQ10, Ibedenone, CARNAWARE, L-Carnosine

Taurine

Melatonin (used sparingly)

Sea Silver

Ambrotose

Wild Yam

No WHEAT, No MILK, NO MSG, NO " natural flavorings (see

www.truthinlabeling.com )

SCD diet or selective use of carbohydrates

Drinking MORE WATER

B-12 shots in the butt

Fixing Metallothionein dysfunction - Pfeiffer Treatment Center

Taking out Fillings (amalgams)

No further use of antibiotics

STEALTH VIRUS THERAPY (www.ccid.org )

AG-Immune, Transfer Factor, Specific Transfer Factor, LACTOFERRIN APO (human

breast milk)

[ ] New Member

> Have rates of childhood epilepsy increased over the last ten years?

> Are most peoples kids on this group using anti-convulsants? Are

> abnormal EEG's worth worrying about? What are the most important

> supplements for seizure?

>

>

>

[Guest guest]

YES, they are. Dr Stieskal on our professional team has seen epilepsy

within 6 months of application. (she was before congress on the thimerisol

issue). I would NOT, NOT, NOT put braces in kids with metabolic problems

and or neurological propesntiy! Send them to Vera's blood test (on

childscreen www.childscreen.org ) click on her name on professional members

and get them a MELISA test.

Kathy

Re: [ ] New Member

> I have a very serious question. I have been reading where braces on

children

> with epilepsy is dangerous. Is that true? I have 2 nephews with epilepsy

> whom are fixing to get braces in less that 4 months. I fear for thier

> safety. They are 9 and 11. They are on anticonvulcient medication daily.

> I am very pertective of them for I have epilepsy also and i dont want them

to

> suffer like i have in the past.

> Please help me.

>

>

>

>

>

[Guest guest]

Dear New Member:

I will give you my opinion with regard to those questions. However, I

suggest you consult a doctor who specializes in treating epilepsy. You

can do that online by checking out the many resource links on our

group's website - .

> Have rates of childhood epilepsy increased over the last ten years? I

> am going to guess that they have gone up simply because we are more

> aware of the problem. There have been TV programs and movies

> associated with epilepsy. Meryl Streep in starred in a made-for-TV

> movie about the ketogenic diet.

> Are most peoples kids on this group using anti-convulsants? I think

> more people are on medication for just about anything that concerns

> mental health. Whether all those people on medication should be in a

> whold different matter. Epilepsy is a mental disorder that is unique

> to the person who has it. Therefore, there are no " one-size-fits-all "

> solutions here. Each case has to be considered on its own merits.

> Are abnormal EEG's worth worrying about? I think anything abnormal is

> worthy of concern. What's important is that an abnormal EEG be

> understood. Like anything, you need to understand what's wrong before

> you can proceed to fix the problem.

> What are the most important supplements for seizure? I do not wish to

> knock supplements. But, the truth is that taking supplements may not

> make any difference at all so far as seizure control is concerned. On

> the other hand, it may make a great deal of difference. It all

> depends upon WHY the person is epileptic. You need to address the

> " why " first before you can settle on a course of action - because the

> " why " should help determine the course of action.

>

This is simply my opinion as a person who has spent most of his life as

an epileptic. Then, nearly two years ago I became drug-free after

having been on various anti-convulsant drugs for 34 years. There is

hope for a better day. I am living proof it can happen.

>

> Lamar

[Guest guest]

Hi Cher,

Usually, thyroid storm occurs when there's an underlying infection. It's

important to rule out infection as a cause so usually when thyroid storm is

done a number of cultures are done.

Ask for a copy of your lab reports to see what's going on. Some of your

symptoms are also seen in hypothyroidism so it would be good to see if your

levels are being controlled on your meds or not.

Nodules can cause hyperthyroidism, so that may be why they want to surgically

remove your thyroid, but I think you need to have more information before you

can make a decision. Take care, Elaine

[Guest guest]

Hi Lori

I give my son Will Carnosine there has been studies from a Dr. Chez that

carnosine helps the neverous system. Will isn't up the Max dosage yet I add

very slow.

Also I have heard that Melatonin giving at night helps with seizures. Gaba

helps with seizures and I recently read an article in the Epilepsy USA that

Omega 3 helps with seizures. I would try one at a night and give a good

amount before adding something else. There are alot of vitamins/Mineral that

help the neverous system it is a matter of finding the right one.

Take Care

Lori

[Guest guest]

Lori:

Welcome to the group. I don't know much about the supplements, but I'm sure

someone on this group will be able to supply you with that info. I just

wanted to welcome you and tell you that I understand your situation. My son

is 13 and also has simple partials that generalize and that sound almost

identical to your sons seizures. I know my son feels much the same way that

your son feels.

Good luck.

>From: Lori s <jaguarnightwalker@...>

>Date: Fri, 16 May 2003 10:24:39 -0500

>

>Hi everyone,

>

>My name is Lori and I'm the mom to 12 yr old Jordan. He was recently

>diagnosed with simple partial. There is no apparent reasoning for the

>sudden change in his life, aside from puberty.

>

>His seizures manifest in his left arm..a slight twitch throughout the day

>that sometimes grows into the whole left side. Those sorts of seizures

>start with an aura of sorts, include him completely aware but unable to

>talk. His breathing is also changed, these last for about a minute. So

>besides the sporadic twitching, he also has larger seizures. Including a

>grand mal at school...before diagnosis or medication.

>

>He's on carbatrol, 300 mg twice a day. I'm just wondering if there are any

>supplements he can take to make himself feel better, reduce the seizure

>activity etc? With the slight tremors throughout the day he has 'feelings'

>like warmth in the right side of his head etc. This causes a great deal of

>anxiety for him as he never knows when it's going to expand into something

>greater.

>

>Thanks for any ideas

>Lori

>

_________________________________________________________________

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[Guest guest]

Hi Deadra. I'm fairly new to this list also but everyone here has been very

friendly and helpful. My 12YO daughter also is getting the MTX injections.

She was originally diagnosed with poly JRA when she was 12 months old, went

into a non-medicated remission about 6 years ago, and blasted out of

remission in a huge way in April of this year. Still trying to get that

under some sort of control...anyway, it is nice to meet you and I wish you

and your son the best!

Sherry

mihome

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----- Original Message -----

From: " Deadra Dunbar " <fortheloveofmyson1998@...>

> I just found this group today. I joined another on Thursday. It is so

good to be able to talk to someone about JRA and to know that there are

other people who may be experiencing some of the things that my family is.

I have a five year old son that has pauciaucular arthritis. It has caused

him to have uveitis and he also has a complicated cataract. We have started

him on the methotrexate injections. I have gotten some great advice on this

subject from the other group. I just wanted to say hi.

[Guest guest]

Hi Deadra,

My son was diagnosed with Systemic onset JRA when he was 6. He's 14 now

and doing pretty well. He has mild cataracts but they're most likely caused

by the long-term oral steroids he's taken, which has unfortunately been a

mainstay of his treatment. He sees the eye doctor regularly to monitor their

progress (or, lately, their lack of progression!) as well as to have his

eyes dilated (twice a year) and have the peripheral vision exams done, since

another of the meds he takes regularly is Plaquinel (which in extremely rare

cases, like 2-3%, can cause reversible retinal changes). His vision hasn't

yet been affected, except that he was recently diagnosed as being nearsighted

and got prescription glasses which he uses in class to see the blackboards,

etc. He has had bouts with conjunctivitis and waking up with eye discharge

but this has been easily treated with steroidal and antibiotic eye drops,

when needed.

Welcome to our group,

Aloha,

Georgina

Deadra Dunbar wrote:

I just found this group today. I joined another on Thursday. It is

so good to be able to talk to someone about JRA and to know that there are

other people who may be experiencing some of the things that my family is.

I have a five year old son that has pauciaucular arthritis. It has caused

him to have uveitis and he also has a complicated cataract. We have started

him on the methotrexate injections. I have gotten some great advice on this

subject from the other group. I just wanted to say hi.