New member

[Guest guest]

hi robbin, have you had melissas leg lengths measured to make sure there is

no discrepancy between them? my docs thought i had scoliosos one time, but

it was just that my right leg was slightly longer than the left, and my

spine curved slighty to make up the difference so i could stand up straight.

weird huh? thanks, brandy

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[Guest guest]

the rhuemy and PT have measured her legs they said they both were 73

i keep a eye on the way she stands and walks

Robbin

[Guest guest]

Sharon

MY daughter Chyanne has jra with a + ana. She was born with a brain

hemorrhage that caused her to cerebral palsy. Her cp. causes her to have

seizures and she also has asthma. I hope this info helps you.

Charlene(chychys mom)

[Guest guest]

Hi Kathy,

No my daughter was not affected by the vaccines. Her seizures began 3

or 4 months after her 6 month shots. We questioned this because for

many months the neurologist could not tell us why she was having

seizures. She had many seizures everyday. She went through all the

tests, MRI, etc.... The only thing they didn't do was a pyridoxine IV

challenge. It would of saved her from months of suffering if they had

done that simple procedure. She has Pyridoxine Dependency not

Pyridoxine Deficiency. Two different things although both can cause

seizures. Because it is so rare most people have never heard

ofPyridoxine DEPENDENCY. It should be considered in cases of

uncontrolled seizures. There are cases where children went years

before a correct diagnoses was made, causing severe disabilities. You

can go to

http://www.homestead.com/b6kids/gospe.html to find out more about

Pyridoxine Dependency. It is believed to be an autosomal recessive

genetic defect. We have no history of Epilepsy in either one of our

families. You can also read Mallorie's story to see the chain of

events she went through.

Even though Mallorie's condition was not caused by vaccines I am

scared to death of them. I also have a 9 month old son who so far has

not shown any signs of seizures.

> Was you daughter affected by vaccines? What is her mercury level?

(hair).

> Peridoxine deficiency sends up a red flag to me, mercury poisining,

from

> childhood vaccines. Not kidding.

> Kathy

> [ ] New Member

>

>

> >Hi Everyone,

> >I just left a couple of posts and thought I should introduce

myself.

> >My name is and my daughter is Mallorie. She is 28 months old.

> >She began having seizures when she was about 10 months old. Drugs

> >would not control her seizures. Finally after having uncontrolled

> >seizures for about 8 months we started her on vitamin B6

(pyridoxine)

> >and in 1 week she quit having seizures and her EEG became normal.

Her

> >seizures resembled infantile spasms. The type of epilepsy she has

is

> >called pyridoxine dependency. She will be on vitamin b6 for her

> >entire life. We have a website for her at

> >http://www.geocities.com/flyingkittymiller. We also have a link to

an

> >article about pyridoxine dependency written by Dr. Gospe if you

would

> >like to read more about it.

> >I have read some of the archives here. WOW!!! Lots of good

> >information. I look forward to knowing all of you.

> >Thanks,

> > mom to Mallorie (PD)

> >

> >

> >

> >_

> >

> >

[Guest guest]

That is very interesting. However, I would still think vaccine. Since

vaccines can put mercury into neural tissues for 30 years, it would be

interesting to see if there is a corrolation. Recently a paper out showed

that pyrodoxine problems can be caused by mercury poisining, that is why I

mentioned it. I will try to grab and capture that chart for you so that you

can look at it, truly disgusting. Any signs of problems with malabsorption?

(leaky gut problems for instance can make you dependent on b-vitamins)

Kathy

[ ] New Member

>>

>>

>> >Hi Everyone,

>> >I just left a couple of posts and thought I should introduce

>myself.

>> >My name is and my daughter is Mallorie. She is 28 months old.

>> >She began having seizures when she was about 10 months old. Drugs

>> >would not control her seizures. Finally after having uncontrolled

>> >seizures for about 8 months we started her on vitamin B6

>(pyridoxine)

>> >and in 1 week she quit having seizures and her EEG became normal.

>Her

>> >seizures resembled infantile spasms. The type of epilepsy she has

>is

>> >called pyridoxine dependency. She will be on vitamin b6 for her

>> >entire life. We have a website for her at

>> >http://www.geocities.com/flyingkittymiller. We also have a link to

>an

>> >article about pyridoxine dependency written by Dr. Gospe if you

>would

>> >like to read more about it.

>> >I have read some of the archives here. WOW!!! Lots of good

>> >information. I look forward to knowing all of you.

>> >Thanks,

>> > mom to Mallorie (PD)

>> >

>> >

>> >

>> >_

>> >

>> >

[Guest guest]

I hope that things get better. This is a great place to talk and read. I do

not feel that I have had any experience with allergies triggering JRA, but

bacterial and viral illness seem to. Someone else may have had the same

experience that you do. Good Luck to you. SHU

[Guest guest]

While in the hospital my son was referred to an allergist, who came in while

he was there and did a biopsy of his rash (in the leg area). They did not

find anything. But since then has been put on Claritin and Zyrtec.

Honestly I do not think it has made a difference, but I do always try to

keep a diary on what he eats and try to compare it when he gets his flares

with the rash. I still have no clue if it has anything to do with

allergies.

-

>From: " Bob Skae " <bskae@...>

>Reply- egroups

> egroups

>Subject: New Member

>Date: Thu, 28 Dec 2000 13:41:55 -0000

>

>My husband joined your group last evening and this is first chance

>to read some of the messages posted. After years of feeling so alone

>and frightened dealing with our daughter's illness, we're so happy to

>be able to reach out to other families who are going through this

>and have been through the good times and the flare-ups.

>

>Our daughter, Tori is now 71/2 and is experiencing a major flare-up

>at the moment. Prior to this flare-up she was Prednisone Free for

>more than a year and was relying on Methotrexate and Enbrel to

>maintain her symptons. On Halloween, she went from running and trick-

>or treating to being hospitalized - and so began our nightmare. She

>has had a very rough two months including two hospitalizations - While

>we are making baby-steps toward her recovery, we are are still

>experiencing set-backs. She has migrating joint pain on her " off " day

>of prednisone, fevers, and other unexplainable problems (stomach

>aches, headaches, trouble sleeping). We have great confidence in our

>doctor, but this does not counteract our fear and frustation in

>dealing with JRA. We long to see Tori running and playing and yes

>even Skiing again with her siblings, but cannot yet see the light at

>the end of this tunnel.

>

>I still feel that allergies (both food and enviornmental) may play a

>part in dealing with this disease or flare-ups but have not been able

>to find a physician who is willing to work with me on this - Any

>help you can offer on this subject would be greatly appreciated.

>

>Again, thanks for this group - we both needed a place to reach out

>where others know exactly what it's like dealing with JRA

>

_________________________________________________________________

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

[Guest guest]

Hi and welcome. I'm sure you'll find this site quite helpful. It sure has

helped me. My son is 13 with jra (pauci). He also has very bad allergies.

Had numerous ear infections as a small child,two ear tube operations, and

then developed asthma all before the age of 5. He then developed the jra at

13. Our rheumy told us that all of this is related due to his " hyper-immune

system " (that's what she called it). So I do beleive that the allergies do

play a role. He has been tested twice - most recently at age 10 - and has

many enviromental allergies but no food allergies. I think we're going to

try the fish oil that was suggested. Baseball season is just around the

corner and his goal is to be able to play this year after being unable all

last summer. Hope your daughter comes out of her flare quickly. This site

sure offers alot of support. Welcome again, Michele T.

New Member

My husband joined your group last evening and this is first chance

to read some of the messages posted. After years of feeling so alone

and frightened dealing with our daughter's illness, we're so happy to

be able to reach out to other families who are going through this

and have been through the good times and the flare-ups.

Our daughter, Tori is now 71/2 and is experiencing a major flare-up

at the moment. Prior to this flare-up she was Prednisone Free for

more than a year and was relying on Methotrexate and Enbrel to

maintain her symptons. On Halloween, she went from running and trick-

or treating to being hospitalized - and so began our nightmare. She

has had a very rough two months including two hospitalizations - While

we are making baby-steps toward her recovery, we are are still

experiencing set-backs. She has migrating joint pain on her " off " day

of prednisone, fevers, and other unexplainable problems (stomach

aches, headaches, trouble sleeping). We have great confidence in our

doctor, but this does not counteract our fear and frustation in

dealing with JRA. We long to see Tori running and playing and yes

even Skiing again with her siblings, but cannot yet see the light at

the end of this tunnel.

I still feel that allergies (both food and enviornmental) may play a

part in dealing with this disease or flare-ups but have not been able

to find a physician who is willing to work with me on this - Any

help you can offer on this subject would be greatly appreciated.

Again, thanks for this group - we both needed a place to reach out

where others know exactly what it's like dealing with JRA

For links to websites with JRA info please visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

To manage your subscription settings, visit:

subscribe/

[Guest guest]

Dear Tori's Mom and Dad,

Welcome to the group.

You are asking questions we have been puzzeling over for some time. Each parent

and mature sufferer here wonders what ever caused this pain and what on earth

can we do to help fix or lessen it. There are many thoughts out about genetics,

food allergies, environmental effects and chemical sensitivity. As far as we

can tell this frustrating condition can be a result of some or all of these

factors. What we all seem to find is that each seems to require a slightly

different treatment. Each has what we affectionately refer to as our Drug

Cocktail - For my son we have Prednisolone, Methotrexate, Enbrel, Cyclosporin,

Naprosyn, Lukovorin, Ferrous Sulfate, Claritin and Albuterol. I have read about

and tested out the Wheat, red meat and Milk allergies with little success, but

for some it helps to change diet. I am now thinking about trying the fish oil

pills. I think we all find this an ongoing journey of trying to keep the immune

system and inflamation in check.

I recently read a report from the list archives that stated Mayo Clinic found

the immune system of RA sufferers is " prematurely aged " , it has lost the ability

to discern proper response. Fortunately the scientific community is getting

deeper into the microbiologic area and better understanding what cytokines,

enzymes and protines are at play in the body. With each passing year they

unlock more secrets and give us more hope.

As you expressed the desire to learn from other families what tools and

practices are helping and looking at sibling residual effects & long term impact

on family life - you will certainly see these things here on the list. We all

tend to lay open our hurts and fears when things get tough and the others pipe

in sharing hope and treatments. It is truly a support group. We can all tell

you this has changed our lives tremendously. Some ways, as suspected are

negative, but in some ways we are finding beauty, love, hope and caring hidden

in the darkness. Our children become an inspiration to us and others as they

face the trials before them. I have discovered many adults around me who have

RA, Lupus, Rheiters Syndrome or Fibro Mialgia (all related conditions) that are

inspired to better face their own pains when they see a three year old worse off

than themselves. They come to me with questions about medications and

treatments often before they go to their Dr as they know I read everything I can

find in hope of a cure for Skyler.

Well, I think I have gone on beyond my time limit.

God bless and welcome to the group. Our prayers go out to you and your family.

[ & Skyler]

New Member

My husband joined your group last evening and this is first chance

to read some of the messages posted. After years of feeling so alone

and frightened dealing with our daughter's illness, we're so happy to

be able to reach out to other families who are going through this

and have been through the good times and the flare-ups.

Our daughter, Tori is now 71/2 and is experiencing a major flare-up

at the moment. Prior to this flare-up she was Prednisone Free for

more than a year and was relying on Methotrexate and Enbrel to

maintain her symptons. On Halloween, she went from running and trick-

or treating to being hospitalized - and so began our nightmare. She

has had a very rough two months including two hospitalizations - While

we are making baby-steps toward her recovery, we are are still

experiencing set-backs. She has migrating joint pain on her " off " day

of prednisone, fevers, and other unexplainable problems (stomach

aches, headaches, trouble sleeping). We have great confidence in our

doctor, but this does not counteract our fear and frustation in

dealing with JRA. We long to see Tori running and playing and yes

even Skiing again with her siblings, but cannot yet see the light at

the end of this tunnel.

I still feel that allergies (both food and enviornmental) may play a

part in dealing with this disease or flare-ups but have not been able

to find a physician who is willing to work with me on this - Any

help you can offer on this subject would be greatly appreciated.

Again, thanks for this group - we both needed a place to reach out

where others know exactly what it's like dealing with JRA

eGroups Sponsor

For links to websites with JRA info please visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

To manage your subscription settings, visit:

subscribe/

[Guest guest]

Hi to new member

i can understand the way you feel

i also believe its something in what is in foods or enviroment

i will tell you a allergist will do the testing on the child

my son went through the scratch test he has asthma

and sinus problems we just needed to know what triggered his

later in his life he ended up diagnosed with ADHD something else also

that had been mentioned as allergy reaction and chemical imbalance

i did research with him and found out about MSG and how other kids rescted

to this

from talks with teachers and other staff talked with a few doctors

i thought ok i am done i know what i wanted to know

it never crossed my mind that years later i would be thinking about the

research again for my daughter who is asthmatic also and that ADHD was

thought about

then one day she woke and couldnt walk

the MSG and other chemicals used in our foods we TRUST could be a trigger

for

JRA but right now my researching is on melissa and i have taken her

favorite food away from her did it do any good? lolol in my opinion YES

no more macroni and cheese in this house i never thought this would be

something i would take out of my house but the MSG in this is high

am i willing to give it back to her no i aint at least not right now

the foods we eat now have so much in it think back to the way our parents

ate

did they have kids with as many problems as we do now ? no

was the rate of asthmatics so high? was the rate of pain among kids at this

high rate we see now in their grand kids OUR kids

this is something we have to look at not all works with kids

but we have to treat the kids with medication right now cause we dont know

NO other way but with research we will one day be able to see our kids pain

free

Robbin

[Guest guest]

Robbin,

My daughter went through the same thing to because of her asthma and

excemawe found out the she a allergies to 26 of the things they tested her on

out of 31 items. Some was food, dyes, milk/dairy products,soaps and etc...

Later on she was too dxed as ADD then ADHD,Tourette Syndrome and other

medical problems. We do eat natural food because something in the boxed and

canned foods triggered her asthma and excema. She gets the excema really bad

in her face and on the sole of her feet. We use cetaphil and accessories for

our skin, but my boys doesn't like it because it doesn't have a smell, but

this is the only way Drese won't get the wrong soap. After she went to the

doctor for a sore throat and went back for swollen hands she was then dxed

with JRA. She keeps a sore throat, but she has polyarticular Jra. So I don't

know what brought on the JRA I'M still puzzled about that.

Ywellen

[Guest guest]

In a message dated 12/28/00 8:42:55 AM Eastern Standard Time, bskae@...

writes:

> I still feel that allergies (both food and enviornmental) may play a

> part in dealing with this disease or flare-ups but have not been able

> to find a physician who is willing to work with me on this - Any

> help you can offer on this subject would be greatly appreciated.

>

That is something i have often thought of too!!!

[Guest guest]

Ywellen

melissa also has poly JRA the sore throat is interesting

melissa has been complaining of that but the doctor looks at it and its ok

it might be just the sinuses draining this puzzles me

now

how is she doing now?

Robbin

[Guest guest]

Robbin,

She complaining still about her throat hurting and thr dr did the strep

test it was negative and her sinuses are clear so we don't know what's going

on with her. We go to her rheumy on the 2nd on Jan. for her check up, but I'm

thinking seriously about switching from him. He never gives me the results of

her lab work and always wants to add something without explaining why he's

adding it. So I don't let him add it and he gets mad and say it's going to

help her. He doesn't like me asking too many questions, because it's like I

know more than him, but I only want to know why he's adding meds and not

explaining his reasons. Yes thing have gotten a lil worse than they were but

hey I still expect my questions to be answered. Like she has sores on

top/bottom of here right foot,right and left arms and certain areas of her

body and for 6 months he's treated her for impetigo and they haven't cleared

up, so I took her to her regular ped. and she told me that those were sores

from the mtx, because it can to burn your skin as well as give you mouth

sores. I was so surprised when she told me that . I couldn't believe it so I

went for a 2nd opinion and got the same answer, but the rheumy is the one

that has to take her off of it. Funny huh? Well I took her off of it myself

until we go back to the rheumy in Jan.

Sorry for the rambling.

Ywellen

[Guest guest]

Ywellen

i would have to taken melissa off that

the doctor is suppose to let you know about everything

i know both of the rhuemys i have taken melissa to get mad at me but

we are parents and want info soon as they get it

i get a copy of here lab work everytime she has it done

and i ask alot of questions with the medication we are on just enough to help

her feel better right now but i am experienting

Robbin

[Guest guest]

It's funny that I come on here and find every symptom my daughter is having

discussed here, but the docs don't want to pinpoint exact diagnosis just

yet.

My daughter complains of sore throats often and they can't ever find

anything. They did a rapid strep recently that came back positive, but the

Ped was suspicious and had another sample sent for culture. She said that

was the only way to be sure. The culture came back negative. She also has

allergy symptoms and is on Claritin for them. This is very strange.

Angie

Re: New Member

>Ywellen

> melissa also has poly JRA the sore throat is interesting

>melissa has been complaining of that but the doctor looks at it and its ok

>it might be just the sinuses draining this puzzles me

>now

>how is she doing now?

>Robbin

>

>

>For links to websites with JRA info please visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>To manage your subscription settings, visit:

>subscribe/

>

[Guest guest]

Hi Ywellen,

Communication is definitely a major part of being able to have a good

working relationship with your child's doctor. Seems like it may be a

good idea to look around for another pediatric rheumatologist who will

be more willing to talk with you at length about the reasoning behind

having your daughter take certain meds. We don't have the luxury of

being able to switch rheumys (not that we'd want to at this point.) We

have none on our island ... and only 3 in the entire state; the two we

see and one who works at Tripler Army Medical Center. That's one reason

I found it so important to use the internet to find out more about the

ways systemic JRA is being treated. Just wanted to see how the medical

care my son receives compares with 'the norm' ... if there even is such

a thing. I think we've been very fortunate. Great doctors who care

deeply and show it: by the way they interact with the children and their

families. Always willing to explain the pros and cons of each treatment

and to accept input from us. Keeping informed on the latest research and

advances, to be able to answer all the questions we come up with. Being

able to talk in detail about all of our concerns. I hope you'll be able

to find someone like this too, so that it will be easier for you to try

to get Drese's arthritis controlled well.

On the other matter, I have never heard about MTX being able to burn

skin. I have never seen anything in the medical literature to even

suggest the possibility. Did these two doctors cite any references? If

so, I'd love to be able to look them up. Since my son has been taking

MTX for almost 6 years I like to know as much as I can about possible

side effects. Had Zhondrese been taking folic acid supplements? Has her

arthritis gotten lots worse since she stopped the MTX? What is she

currently taking to treat it?

I hope things get better soon.

Take care,

Georgina

sweetpea200001@... wrote:

>

> Robbin,

> She complaining still about her throat hurting and thr dr did the strep

> test it was negative and her sinuses are clear so we don't know what's going

> on with her. We go to her rheumy on the 2nd on Jan. for her check up, but I'm

> thinking seriously about switching from him. He never gives me the results of

> her lab work and always wants to add something without explaining why he's

> adding it. So I don't let him add it and he gets mad and say it's going to

> help her. He doesn't like me asking too many questions, because it's like I

> know more than him, but I only want to know why he's adding meds and not

> explaining his reasons. Yes thing have gotten a lil worse than they were but

> hey I still expect my questions to be answered. Like she has sores on

> top/bottom of here right foot,right and left arms and certain areas of her

> body and for 6 months he's treated her for impetigo and they haven't cleared

> up, so I took her to her regular ped. and she told me that those were sores

> from the mtx, because it can to burn your skin as well as give you mouth

> sores. I was so surprised when she told me that . I couldn't believe it so I

> went for a 2nd opinion and got the same answer, but the rheumy is the one

> that has to take her off of it. Funny huh? Well I took her off of it myself

> until we go back to the rheumy in Jan.

> Sorry for the rambling.

> Ywellen

[Guest guest]

In a message dated 12/30/2000 11:04:01 PM Pacific Standard Time,

sweetpea200001@... writes:

> so I took her to her regular ped. and she told me that those were sores

> from the mtx, because it can to burn your skin as well as give you mouth

> sores. I was so surprised when she told me that . I couldn't believe it so

> I

> went for a 2nd opinion and got the same answer, but the rheumy is the one

> that has to take her off of it. Funny huh? Well I took her off of it myself

> until we go back to the rheumy in Jan.

>

Untill you get a new DR. Ask the Pharmasist about ANY side effects the new

meds can have

Marcie, s Mom

[Guest guest]

Hi and everyone!

I will try to condense this. First of all I went to your link and it didn't work. : (

Second of all, this is my first response to anyone. I am a Naturopathic Doctor with a Masters in Herbalism. I'm on this site because my son, age 13 (), has epilepsy. No matter what we are trying we are just not finding the right combination for him just yet and thought I might get some info on here.

My dissertation was on ADHD/ADD/Learning Disabilities & Dyslexia. Of which has. was born March 21, 1987, six weeks early. His coloring was horrible, his heart rate was awful and he should have been taken by C-Section long before I delivered. I had been in induced labor for 13 hours and we nearly lost him. He had the normal things for six weeks early and then upon time to leave the hospital it was determined he was jaundice. & I had a blood incompatibility and I personally feel it should have been found long before.

I think, I know that sounds badly, that he didn't have seizures until...........VACCINES!!! When was three years old he was in the floor playing with his brother and slowly tensed up and fell backwards, his eyes rolled up in his head and after 20 minutes he started turning blue. I freaked and called the ambulance. He was taken to the hospital. Now almost 60 minutes after all of this he started with a fever. Nothing was written up on his records and nothing was said to me. Nothing was ever mentioned again. Please remember at this time I was a young mother and really didn't know much different.

It was not until turned seven and had an excellent mainstream teacher, that had previously been LD for 20 years, did we realize that perhaps he had a seizure disorder. I want to add at this point that 1 month before this suspicion that he was tripled up on MMR. Our ped had always given them separate. I was very ill at the time and so was our daughter and my mother took to the health clinic. They were given strict instructions by myself and my mother, at least seven times, and given the written shot record that he only needed the Measles, as it was required for school enrollment. They still gave him the MMR and snuck in the Hepatitis injections. At this time I didn't know what I know now. His teacher mentioned to me that she though he was having seizures and I looked dumbfounded. We have a cousin, that was kicked in the head by a horse, and had grand mals and this was my only clue.

No way did I know there were different types of seizures. At this time was diagnosed with Petit Mals. We had psych testing, counseling, etc. To make a long story short, he was taking 30 pills a day. Depakote didn't handle it all and caused tremors, take Endurol to help with tremors, it caused him to not sleep, take Amitriptyline and it causes bedwetting, etc., etc., you get the picture.

I moved to Oklahoma, to shake a nasty divorce, death threats, etc., from the ex-husband and to give the children a better life. I started reading more about herbs and thought about my great grandmother, full blood Cherokee Indian, and started studying hard. Did a short internship and learned this was where I was suppose to be. Have taken lots of classes and courses and here we are. Got him off all the scripts and have done nothing but herbs for four years.

Now is going through puberty (our house is wonderful, daughter in puberty also, me in menopause, my poor husband!!). I think the puberty is what is causing everything. We are taking supplements out the whazoo and have had a run with Lamictal. Ruined his poor little life, vomiting, blindness, hallucinations, etc. We are now trying Depakote again, but it is now bringing out drop and tonic's and I don't like that. Would prefer the 75+ petit mals again.

I'm guarding the diet, doing the supplements and trying to keep the scripts to a minimum. He is losing weight and has no desire to eat. He is 5'4" and weighs 89 pounds. He is very sensitive to touch and complains of his ribs hurting all the time. MRI is clear, nothing on it. EEG shows petit mals and subclinicals. Not sure the next step to ask for. Any ideas?????

Has always had allergies. Wondering possible juvenile arthritis. Very sensitive emotionally also and very aggressive, especially toward sister. Yes, I'm a ND and that is just initials. Sometimes when it is your own child you miss things. All the book smarts doesn't mean diddly you know what sometimes.

Would appreciate any help. Sorry for rambling, sorry for lack of proper paragraphs and improper spelling perhaps. I'm tired and it is rather cold in my office. I'm horribly behind on work and trying to catch up.

Appreciate any help in advance. OH, our next DR appointment is Tuesday. Would like to go armed for bear. Will be preparing my defense all weekend!!

C. & in OK

From: Jim Blanco

egroups

Sent: Saturday, December 23, 2000 5:21 PM

Subject: Re: [ ] New Member

Was you daughter affected by vaccines? What is her mercury level? (hair).Peridoxine deficiency sends up a red flag to me, mercury poisining, fromchildhood vaccines. Not kidding.Kathy [ ] New Member>Hi Everyone,>I just left a couple of posts and thought I should introduce myself.>My name is and my daughter is Mallorie. She is 28 months old.>She began having seizures when she was about 10 months old. Drugs>would not control her seizures. Finally after having uncontrolled>seizures for about 8 months we started her on vitamin B6 (pyridoxine)>and in 1 week she quit having seizures and her EEG became normal. Her>seizures resembled infantile spasms. The type of epilepsy she has is>called pyridoxine dependency. She will be on vitamin b6 for her>entire life. We have a website for her at>http://www.geocities.com/flyingkittymiller. We also have a link to an>article about pyridoxine dependency written by Dr. Gospe if you would>like to read more about it.>I have read some of the archives here. WOW!!! Lots of good>information. I look forward to knowing all of you.>Thanks,> mom to Mallorie (PD)>>>>_>>

[Guest guest]

You must look at the newest information out by the CAN foundation that many kids with neuro problems are mercury poisined from their childhood vaccines. This can cause seizures, mito disorders and general immune deactivation as well as gut related problems, all interconnected of course with neurotransmission in the brain. You can email private and I can send some info for you. HAve you tried ESSIAC?

Kathy

[ ] New Member>Hi Everyone,>I just left a couple of posts and thought I should introduce myself.>My name is and my daughter is Mallorie. She is 28 months old.>She began having seizures when she was about 10 months old. Drugs>would not control her seizures. Finally after having uncontrolled>seizures for about 8 months we started her on vitamin B6 (pyridoxine)>and in 1 week she quit having seizures and her EEG became normal. Her>seizures resembled infantile spasms. The type of epilepsy she has is>called pyridoxine dependency. She will be on vitamin b6 for her>entire life. We have a website for her at>http://www.geocities.com/flyingkittymiller. We also have a link to an>article about pyridoxine dependency written by Dr. Gospe if you would>like to read more about it.>I have read some of the archives here. WOW!!! Lots of good>information. I look forward to knowing all of you.>Thanks,> mom to Mallorie (PD)>>>>_>>

[Guest guest]

Hi Amy

I also went through the same thing you did, my daughter was diagnosed with

JRA at the age of 5 and it was pretty heartbreaking for the first year or

so. You've got to find out everything you can about this disease, the more

you find out and the more you ask questions the saner you will feel. It

sounds like I'm stating the obvious but none of this is your's or Dakota's

fault and you'll eventually get to a place where you you'll find your feet.

Why don't you tell us the story of his disease and how his diagnosis came

about? Sometimes talking about it makes a big difference, even if you think

you're going on and on....

thanks

Ady Ogilvie

> New Member

>

> Hello

> I' m Amy and my 2 year old son Dakota just got diagnosed with JRA. I

> wondering if anybody had any suggestions, or advice for me. I am a single

> mom

> and well it is kind hard dealing with everything by myself. I would really

>

> appreciate it.

> Thank you very much.

>

>

>

[Guest guest]

Amy-

Tell us more about what's going on with Dakota. What were his symptoms? How

long did it take to get him diagnosed? What kind of jra does he have? Where

do you live? Have you found a good doctor? I'm sure it's very hard dealing

with all of this by yourself. The first few months, for me, were devastating

and very confusing. Finding this group will be a plus for you. The best

thing to do is get all the info you can. My husband views it as focusing on

the negative. I don't. Knowing all the bad stuff that can happen makes me

thankful my daughter is doing as well as she is. But I do want to know what

is possible so I can be on the lookout for it, and so I don't let anything

slide. I've learned far more from this group than I have from my daughter's

doctors. Ask all the questions you can think of.

Diane

[Guest guest]

You're not alone. My daughter was diagnosed last week at 6 1/2. This is a good

group- you'll learn a lot and feel a lot of support. A lot of good web sites

and information. Learn as much as you can about it and hook into your network

of friends and family to help you out. Best of luck to you and Dakota.

>>> Amybear41@... 02/05 11:47 PM >>>

[Guest guest]

Hello Amy,

Welcome to the group, though I wish you did not need to.

I am , a single father to Skyler. He is 3 and was diagnosed at 10 months.

The best advice I can give you is to be very active here and voice all your

thoughts/fears/hopes.

The single biggest problem we face as parents of JRA kids is the lack of info.

Here you will find you are NOT alone. All the concerns are shared and you will

see what others are going through ranging from medical to financial and

emotional.

God bless you and your child and know we care.

[ & Skyler]

New Member

Hello

I' m Amy and my 2 year old son Dakota just got diagnosed with JRA. I

wondering if anybody had any suggestions, or advice for me. I am a single mom

and well it is kind hard dealing with everything by myself. I would really

appreciate it.

Thank you very much.

[Guest guest]

Hi Amy and welcome! I sure wish we were meeting under different

circumstances but let me say you have come to one great spot. Everyone is

here for the same reason! My advice to you as a 30 year veteran to JRA is to

educate yourself !! and keep coming back here!! Welcome!! Donna