Introduction

[Guest guest]

Thanks for the info. Both of my "normal" thyroid diagnoses were from endocrinologists....but I'll check out the website anyway!

kiki_anne65 <kiki_anne65@...> wrote: They are finding now that you can have "normal" levels of thyroid hormones, yet actually be hypothyroid. This happened to me and it took several year before the docs finally admitted it and that took a trip to an endocrinologist. I took Synthroid .300 mg for over 5 years and then switched to a T-3 medication because I still had symptoms. Check out this web site and see if any of it pertains to you. www.wilsonssyndrome.cm Hopefully you can find a doc that can help you. I felt a lot better on the T-3 until I had surgery last year. Then the Candidiasis just took over. Best of luck to you!Kim> Dear Pam,> You'll get lots of very good advices from all lovely people in this> list.....I would just say that first relief will be peace

and relax for your> soul and spirit from the fact that you're not alone...this is what happened> to me.....I still have to do quite a lot of work but I feel so much better:> go on like this and you'll be right on track!> All the best to you> Simona> > Introduction> > I just joined the group and wanted to introduce myself before I > start seeking advice. I'm 44, 30 lbs overweight and suffering from > the weirdest list of symptoms you can imagine (well, maybe not). I > just had a food allergy test which showed a high allergy to beef & > corn - so I've stopped eating them completely. I also have a very > strong active candida and am taking Sporanox 100mg for 20

days. I > have also stopped all sugar in the last 10 days and will try to best > to keep that up. My bloodwork also showed a high saturation of iron > which is weird because I've always been anemic until now. My > glucose level was slightly elevated but still in the acceptable > range (96 and 99 is the top allowed by the lab). My symptoms are:> fatigue, hoarse raspy voice frequently, laryngitis every couple of > months, bowel movements are very infrequent (weekly), UTI every > couple of months, weight gain and losing it is soooo very hard, > foggy head, poor memory, dry itchy skin, tingling in my fingers when > I wake up, hands are always cold, hair loss which is scaring the > daylights out of me. Any words of wisdom or advice would be greatly > appreciated. So far my dr has only given me this one prescription > and other than that I'm just

trying to learn on my one how to deal > with this. I look forward to learning from you.> > > > >

[Guest guest]

Welcome, .

Jan

wrote:

>I wanted to just quickly introduce myself. My name is , I'm 32 years old

stay at home mom of a beautiful two year old little girl. I had a complete

thyroidectomy done on July 15 and and slowly recovering from the surgery and

starting the road to a life without my thyroid. My family is riddled with

thyroid problems, my mother has had thyroid cancer, an aunt has had a partial

thyroidectomy and both grandmothers are on medication... so it's not all

together new to me, but still, it's a bit intimidating not knowing the future.

>

>I'm looking forward to learning what the future could hold, and thank you for

allowing me to be a part of the group.

>

>(¸.·'´(¸.·'´ `'·.¸)`' ·.¸)

>Signature Tag Maker for Gotta Pixel

>Stop on by and request a tag!

>

>

>

>

[Guest guest]

You should expect awesome service. I would like to introduce myself my name

is I have polyarticular JRA and Spondyloarthopathy and I have been seen

at Lucille Packard for.. well quite some time now. I am 19 now and became a

patient at I think 14, although I was diagnosed at 6. Dr. Sanborge is chief of

pediatric rheumatology and she is so amazing..hopefully she'll be your

grandaughters doctor.. she's mine and well I love her I gotta admit she is the

best!.. She is a wonderfully compasionate doctor and is just so amazing. The

other

pediatric rheumatologists are just as awesome though. Your grand daughter is

very lucky to be seen at LPCH because it is an awesome hospital!!

[Guest guest]

Hi Deb:

Welcome to the group. You will find support, information and compassion from

all here. I have asked a ton (ask anyone) of questions here and have always

gotten a response. I am sorry that your grandbaby is in pain:(

The diagnosis times varies from person to person. Some quickly, some months

and some even years (though this is less frequent). Sounds like you and the

doctors are right on top of things for your granddaughter. My daughter,

Caitlin, first presented with high fever (105), head to toe rash, joint pain

(couldn't walk), sore throat and exhaustion. She was hospitalized in November

and

had a bone marrow biopsy the day before Christmas. In March the rheumy said

her blood work shows Still's Disease (systemic JRA), but her arthritis showed

reactive arthritis. He will not say 100% that it is Still's. It's just not

clear cut. Even now, she has a rash and we are not certain if it's an allergice

reaction or the Still's rash. Very frustrating!

I imagine her jumping on the bed:) What is her name?

Good luck at the appointment. I hope she is feeling better soon and you get

some answers quickly.

Take care.

Patty

[Guest guest]

Dear Deb, Welcome to the group, but I am sad to read that another child may

have systemic jra. My daughter is 15, and has had it for five years now.

You are on the right track by seeing a ped rheumy so quickly. Hopefully, he

or she will be aggressive with treatment. The onset of the disease can be

like a fire that has to be contained, and many times it is the worst time of

the disease. Many of us had to struggle to get a diagnosis and that has

meant that our children had to suffer longer.

I would advise for you to start a diary. Have questions written down and

then write the answers right in the diary. Sometimes this disease can

become a blur, and it is nice to have notes to refer back to. The eating

problem is part of the disease. My daughter is very thin, it seems like

she doesn't gain weight with anything. Once the disease gets more under

control your grandchild should regain her appetite. Every child responds

differently to the medications, and you just have to find the drug cocktail

that works for your child. Giving these medications to such a young child

can be worrisome, but I give the medicines to my child with confidence

now-for I know it is way better than the alternative. There are plenty of

others here with younger kids with systemic and I am sure they will chime

in. Stay here and ask your questions, for there are years and years of

experience here. I learn everyday still more about this disease. Good luck

and God bless. (n, 15, systemic)

Introduction

> I am new to the list. We have custody of our 2 year old granddaughter

(and her 5 year old brother). The doctor suspects she may have systemic

JRA. Our first visit to the pediatric rheumatologist is next Monday. We

will be going to Lucile Packard in Palo Alto, CA. What should we expect?

How long does it take to determine a diagnosis? After reading so many

stories about pain here, I am a little frightened for my budding and

imaginative two year old.

>

> Her symptoms include swelling of all joints in her hands, feet, elbows and

knees. She has lost much of her ability to move her right ankle and getting

a properly sized shoe on without hurting her is almost impossible these

days. She is extremely stiff in the mornings and after her nap.

>

> She is no longer interested in food and seems to be very small for her

age. She weighs around 20 pounds and is 28 months. When we first got

custody, the doctor was not sure if the joint swelling was due to

malnutrition or JRA. Now she feels that the malnutrition has been addressed

that it is time to look at JRA.

>

> In addition to pain which makes it hard for her to sleep all night

(usually she wakes up every 2-3 hours screaming and needs to be lifted and

adjusted.), she seems to tire quickly. She is so excited when she is

" running " . It is so funny to see her yell out, " Look gramma, I am running! "

when she is quick pacing a circle in the living room. Or Look I am

jumping -- when her feet never launch off the bed -- it does slightly

bounce. I just tell her I am proud of her and keep up the good work. I

never thought I would be telling a two year old it is okay to jump on the

bed.

>

> A couple of weeks ago she developed a very fine rash all over her chest

and arms -- some on her face. The doctor felt it was measles but after

reading the various posts here, I wonder. She did have her MMR shot last

year.

>

> I'm not sure what to expect. We are just at the beginning of what sounds

like a potentially long road. I am worried.

>

> Gramma LaLa

> Deb

> California

>

>

[Guest guest]

>Hi everyone,

>

>My name is Sherri and I am new to the group. I found a reference to

>this group on the Native Nutrition group...I also belong to Native

>Family Nutrition and Raw Dairy.

Hi Sherri

You mentioned you are interested in kefir and sourdough. Did you

know you can make a sourdough starter using kefir whey as the

innoculant?

Darrell

[Guest guest]

Hi Sherri

You mentioned you are interested in kefir and sourdough. Did you

know you can make a sourdough starter using kefir whey as the

innoculant?

Darrell

Darrell,

No I didn't know that. How would I go about doing that? How long is kefir

whey good for in the refrigerator? Sorry, I know we are not supposed to talk

about milk products.

TIA,

Sherri

[Guest guest]

@@@@@

> No I didn't know that. How would I go about doing that? How long is

> kefir whey good for in the refrigerator? Sorry, I know we are not supposed

> to talk about milk products.

>

> TIA,

> Sherri

@@@@@

There's no *strict* restriction about milk topics! Just a fuzzy one.

It's great to discuss interconnections between things and kefir will

inevitably be discussed in its connection to other fermented foods,

and this example of " sourdough via kefir whey " is a perfect example of

how it naturally comes up while discussing other things. Also, the

list owner is a kefir junkie anyway. :-) The idea is just not to be

redundant with respect to the existing dairy forums, because they are

fantastic and well-established resources! Also, pretty much anytime

a person has a question about kefir, the answer is already on Dom's

website!

Kefir whey is good for at least " many months " in the fridge, and

probably " many years " , but I don't think anyone has ever let it go

long enough to find out if it *ever* goes bad! Now, I'm sure some of

the bacteria die off and so on after a while, maybe weakening its

innoculatory power a little, but it's still perfectly usable after

many months. There is a constant flux in the populations of the

little microbial critters in any fermented food, so it's not a

question of " going bad " as much as " being more or less effective for a

given application " .

Mike

SE Pennsylvania

The best way to predict the future is to invent it. --Alan Kay

[Guest guest]

Thank you Micael and Darrell! I will give it a try and let you know how it

goes.

Thanks,

Sherri

@@@@@

> No I didn't know that. How would I go about doing that? How long is

> kefir whey good for in the refrigerator? Sorry, I know we are not supposed

> to talk about milk products.

>

> TIA,

> Sherri

@@@@@

There's no *strict* restriction about milk topics! Just a fuzzy one.

It's great to discuss interconnections between things and kefir will

inevitably be discussed in its connection to other fermented foods,

and this example of " sourdough via kefir whey " is a perfect example of

how it naturally comes up while discussing other things. Also, the

list owner is a kefir junkie anyway. :-) The idea is just not to be

redundant with respect to the existing dairy forums, because they are

fantastic and well-established resources! Also, pretty much anytime

a person has a question about kefir, the answer is already on Dom's

website!

Kefir whey is good for at least " many months " in the fridge, and

probably " many years " , but I don't think anyone has ever let it go

long enough to find out if it *ever* goes bad! Now, I'm sure some of

the bacteria die off and so on after a while, maybe weakening its

innoculatory power a little, but it's still perfectly usable after

many months. There is a constant flux in the populations of the

little microbial critters in any fermented food, so it's not a

question of " going bad " as much as " being more or less effective for a

given application " .

Mike

SE Pennsylvania

The best way to predict the future is to invent it. --Alan Kay

[Guest guest]

Hi! My name is , new here too.

On the ginger carrots subject, I dont know how much salt you are using but the

Makers Diet has Sally's recipe in it too & it only calls for 2 tsp not tbsp. My

husband tried it this way & worked great, nice & tangy!!

stephanie

Introduction

Date: Mon, 18 Oct 2004 23:05:34 -0000

From: " oliveview1966 " <krollr@...>

My name is Sherri and I am new to the group.

I'm answering your post, Sherri, because I wanted to comment on

something you said. But I'll take this opportunity to quickly introduce

myself too. My name is Sherry too -- with a " y. " <G> I came over here

from Dom's kefir site. I had been wanting to make kefir for a long time,

after tasting some commercial stuff so I joined Dom's group and got some

grains. I love the stuff!

Next step was to get the book, " Nourishing Traditions. " Wowzer! I am

starting to have fun! I'm experimenting with some of the recipes, as well as

becoming educated on what is " real " food.

And now to my comment on something you said, Sherri. The first

fermented veggie I tried from the NT book was the " Gingered Carrots " too.

And I agree! They are too darned salty! I like salt, but that's too much.

I think maybe I'll try the recipe again but cut down on the salt. Hopefully

they'll ferment okay but be better tasting.

I was glad to see I'm not the only one with that opinion about that

particular recipe.

Sherry (from Oregon)

[Guest guest]

If you find them too salty, try adding some whey and cut down on the salt.

This is what I do for all of my fermented veggies with the exception of

cabbage!. You definitely need something in your mix to prevent the " bad "

things from growing.

Randy

Re: Introduction

Hi! My name is , new here too.

On the ginger carrots subject, I dont know how much salt you are using but

the Makers Diet has Sally's recipe in it too & it only calls for 2 tsp not

tbsp. My husband tried it this way & worked great, nice & tangy!!

stephanie

Introduction

Date: Mon, 18 Oct 2004 23:05:34 -0000

From: " oliveview1966 " <krollr@...>

My name is Sherri and I am new to the group.

I'm answering your post, Sherri, because I wanted to comment on

something you said. But I'll take this opportunity to quickly introduce

myself too. My name is Sherry too -- with a " y. " <G> I came over here

from Dom's kefir site. I had been wanting to make kefir for a long time,

after tasting some commercial stuff so I joined Dom's group and got some

grains. I love the stuff!

Next step was to get the book, " Nourishing Traditions. " Wowzer! I

am

starting to have fun! I'm experimenting with some of the recipes, as well

as

becoming educated on what is " real " food.

And now to my comment on something you said, Sherri. The first

fermented veggie I tried from the NT book was the " Gingered Carrots " too.

And I agree! They are too darned salty! I like salt, but that's too

much.

I think maybe I'll try the recipe again but cut down on the salt.

Hopefully

they'll ferment okay but be better tasting.

I was glad to see I'm not the only one with that opinion about that

particular recipe.

Sherry (from Oregon)

[Guest guest]

Sherry and ,

I think I will try the gingered carrots again and only use 2 tsp instead of 2

TBS of salt. Thank you all for the warm welcome!

Sherri (GA)

Introduction

Date: Mon, 18 Oct 2004 23:05:34 -0000

From: " oliveview1966 " <krollr@...>

My name is Sherri and I am new to the group.

I'm answering your post, Sherri, because I wanted to comment on

something you said. But I'll take this opportunity to quickly introduce

myself too. My name is Sherry too -- with a " y. " <G> I came over here

from Dom's kefir site. I had been wanting to make kefir for a long time,

after tasting some commercial stuff so I joined Dom's group and got some

grains. I love the stuff!

Next step was to get the book, " Nourishing Traditions. " Wowzer! I am

starting to have fun! I'm experimenting with some of the recipes, as well as

becoming educated on what is " real " food.

And now to my comment on something you said, Sherri. The first

fermented veggie I tried from the NT book was the " Gingered Carrots " too.

And I agree! They are too darned salty! I like salt, but that's too much.

I think maybe I'll try the recipe again but cut down on the salt. Hopefully

they'll ferment okay but be better tasting.

I was glad to see I'm not the only one with that opinion about that

particular recipe.

Sherry (from Oregon)

[Guest guest]

Derald,

I too was diagnosed at age 60 one year ago and was quite sick at the time of

diagnosis but have made great progress in the past year. MY ALT was about

1200, my Bilirubin count 6 times normal, I had lost 10 pounds (liked that

part), and my eyes and skin had turned yellow. I was put on 30 mg

Prednisone, and gradually my enzyme counts got better and better. The Pred.

was reduced gradually, and when I was down to 5 mg I started 50 mg Imuran.

At this point I continue on 2.5 mg Pred. every other day and continue on the

50 mg Imuran. All enzyme counts are now normal, and I hope to eventually be

weaned off all drugs. However, I undestand there is always the chance that

medication has to be resumed if the enzyme counts go up again. I understand

the point is to keep the illness under control as well as possible, and many

have to be on some medication most of their lives.

The Pred. was not fun, but I don't think that I had as bad reaction as some.

The worst for me was to feel so wired all the time, and I had a terrible

time sleeping and of course was constanctly tired but feeling so hyper. I

still have some sleepless nights, but life is so much better than when I was

on the high dose. I don't believe that I have had any negative side effects

from the Imuran.

The liver biopsy was really easy for me. Unfortunately my liver biopsy

indicated that the illness has caused significant damage to my liver as I

have cirrhosis. My doctor says the illness has been going on for a long time

to cause that much damage -- quite a surprise for a person who never abused

alcohol or drugs and always ate healthy and excercised regularly. From what

I have read, I think that I have a predisposition for this illness and

cannot figure out anything I was exposed to or ingested that caused the

illness. I feel very lucky to be alive right now and wish you the very best

as you pursue the appropriate diagnosis and treatment.

Pat

I

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/

[Guest guest]

I was diagnosed in Feb '04. I am 33 (32 then). My biopsy was

terrible, but I hear that isn't the norm. If your levels have

dropped maybe you won't be on a highdose of prednisone. My levels

were betwee 200-300 and I started on 40mg of pred., now I am down to

5mg every other day. I have no side effects from the imuran (i take

50mg 3 times a day for a total of 150mg).

Cora

[Guest guest]

Hi, Derald!

I am sure one of the group moderators will be online and be quite

helpful... it seems that one of the posts in the last two or three

weeks was about liver biopsies - one of the members' young sons will

be having his the middle of November.

There's tons to learn from this group if you have time to read some

of the archives -- you'll find that AIH affects almost everyone in a

unique way, that we were all diagnosed at different ages, but that

we've all pretty much understood that we have a predisposition to

the disease that was somehow triggered -- illness, other meds, etc.

I also have two male friends my age (30s) who suddenly developed

severe liver problems after taking ibuprofen -- they had always

taken it and then developed an " allergy " of sorts to it. The one

friend now has liver function tests every few months just to monitor

how he's doing. All from a hiking fall!!!

Anyway, the biopsy will allow the docs to see what's happening with

your liver, and also to assess how much, if any, damage has happened

(and also, I think, give them an idea of how long your liver has

been under stress). I had two needle biopsies a long time ago, and

while they weren't pleasant, neither was painful. Of course, I will

freely admit to liking any excuse for a good sedative, so...

You will also find from this group that meds affect everyone

differently. Some people can't take Imuran at all, I never had

trouble with it. I adjusted to CellCept pretty quickly. I don't

particularly care for prednisone, but I know that others have a much

worse time with it. Go ahead and get a second opinion -- it's not

denial, it's smart -- and make sure you ask lots and lots of

questions about meds and procedures. Ask about the fine print on

secondary effects so you know what to look out for...

And you can always ask questions online. These people are fabulous

and there's a lot of wisdom and knowledge.

Have a great Halloween/All Saints/End of Daylight Savings time, etc.!

Shirl (the " other Shirley " in WA state...)

[Guest guest]

Hi Ned, what I think you are doing is feeding your adrenals, which will help

to raise T3 levels, but I think you will still need thyroid meds. I was

untreated for 30 years after a partial thyroidectomy. I did everything

under the sun to feel well and it was sheer hell. I would not want to go

off Armour thyroid and go back to living hell. I recently had an ND tell

me he was going to get me off Armour by cycling T3 for a few months. I am

not going back to the guy.

Gracia

>

>

> Hi, I am new to this group and would like to introduce myself. I have been

on levoxyl

> for the better part of ten years now. The dosage has steadily and slowly

increased

> over that time, kind of like when one goes to an eye doctor, the

prescription always

> gets stronger because the organ is in the state of atrophy, because of

lack of natural

> use.

>

> I am getting my heath issues together using a natural healing professional

that looks

> at ones blood through a microscope and correts the problems with natural

> supplements and proper eating of organic foods by ones blood type.

>

> I am starting to cut my daily dose of levoxyl in half as I am feeling much

better since

> being on this new diet. I am wondering if it is possible to re-generate

the thyroid,

> pituitary and adrenal gland. My last medical doctor said that the thyroid

does not

> come back, but I don't believe that. I would be interested in any comments

from

> someone who may have tried this or especially from an MD if one is on this

list.

>

> I got here from the cure website. Looking forward to hearing some feedback

on this.

>

> Sincerely, Ned

>

>

>

>

>

>

>

[Guest guest]

Just joined this group, It's great! But could you provide a link to

the " Kefir " group? Thanks, Mar

> @@@@@

> > No I didn't know that. How would I go about doing that? How

long is

> > kefir whey good for in the refrigerator? Sorry, I know we are

not supposed

> > to talk about milk products.

> >

> > TIA,

> > Sherri

> @@@@@

>

> There's no *strict* restriction about milk topics! Just a fuzzy

one.

> It's great to discuss interconnections between things and kefir

will

> inevitably be discussed in its connection to other fermented foods,

> and this example of " sourdough via kefir whey " is a perfect example

of

> how it naturally comes up while discussing other things. Also, the

> list owner is a kefir junkie anyway. :-) The idea is just not to

be

> redundant with respect to the existing dairy forums, because they

are

> fantastic and well-established resources! Also, pretty much

anytime

> a person has a question about kefir, the answer is already on Dom's

> website!

>

> Kefir whey is good for at least " many months " in the fridge, and

> probably " many years " , but I don't think anyone has ever let it go

> long enough to find out if it *ever* goes bad! Now, I'm sure some

of

> the bacteria die off and so on after a while, maybe weakening its

> innoculatory power a little, but it's still perfectly usable after

> many months. There is a constant flux in the populations of the

> little microbial critters in any fermented food, so it's not a

> question of " going bad " as much as " being more or less effective

for a

> given application " .

>

> Mike

> SE Pennsylvania

>

> The best way to predict the future is to invent it. --Alan Kay

[Guest guest]

wow Ned you sound so much like me what diet did you use and what all naturel

products did you use please email me i to want off of lev med 0,125 i want to

try all naturel products

thanks for responding

Barbara

ann41962@...

[Guest guest]

thanks Ned for the response iam a-positive blood type what what foods are

good for this type and where did you get the teas from and is it true that

armour

is made from a pig

Barbara

[Guest guest]

Hi Barbara,

I am using enzymes, hypo aid, chromium GTF, B stress, C, A & D, herbal

teas and working on the methods described in the cure website for

hypothyroidism, meaning cleaning the organs of toxins etc.

Basically the idea presented to me by my health practitioner is to eat

25% protein ( which for me being an AB blood type is turkey, lamb, fish

) and 75% organic steamed vegetables with the purpose in mind not to

have food putrify in the intestines. (Using 2 tablespoons of olive oil

over the vegetables.

In further research many people are satisfied with Armour and it seems

like a good option to me, being that it provides the T3. I would like

to find out more and move in that direction.

Looking for more information and comments.

Sincerely and Thanks,

Ned

[Guest guest]

Hi Barbara,

I did a google search for " eating for your blood type " They will have

charts of what is good for your particular blood type. From what I have

read Armour is made from pigs.

Sincerely, ned

[Guest guest]

Hi, Donna and welcome to the list. My son is one of the teens here with

jra/spondy. He doesn't like taking his meds, but he knows what happens

if he does not. So he takes methotrexate. The sulfasalazine did not work

really well for him (my son was like your son is now on it). The mtx has

changed his life. Perhaps for your son he could research a bit and read

about how much the drug (or others) has helped people. Treatments are so

different now and perhaps a change in meds would help your son do

better. My son is now basically off his anti inflammatory (Celebrex)

except occasionally, like this weekend when he was on his feet all day

at work. He felt the need for some when he got home, but otherwise he

has not needed it. Being a teen is so tough, but also having a chronic

illness like this is even worse. You just want to be like everyone else,

yet you have this thing that makes you a bit different. It is hard as a

parent to know when to push and when to back off. I figure the best I

can do is make sure my son is educated about his disease so he can make

informed decsions. Anyway, welcome to the list. You will find lots of

support and info here. Michele (17, pauci & spondy)

Introduction

I would just like to introduce myself and my son. I have been lurking,

reading the posts for the past week or so. My heart just breaks for

these precious little ones that are suffering so much. Anyway my name is

Donna (44) and I live in Australia. I suffer full body RA, OA and

chronic pain syndrome. Have been totally disabled for 9 years with my

wonderful husband as my full time carer. And confined to a wheelchair

when out. We have 4 children, 3 boys and a girl and our eldest son is

married. Our third son Jordon is 15 and he has juvenile arthritis. He

has suffered pain and stiffness since a little boy. Has been in a lot of

severe pain these past few years. Because of the affects the drugs have

had on me (3 drug related heart attacks, paralytic ilieus and quite a

few more) he has refused to take the drugs apart from

anti-inflammatories, however he is now on Sulphasalazine as he just

wasn't coping. He has dreadful insomnia and is usually awake until very

early in the morning. This year he just wasn't coping at school so he

now does home schooling. However his motivation for most things is

dreadful. He is a drummer but suffers terrible pain in his hands so even

this is very limited. He was granted a wish from the Starlight

foundation (a foundation that grants wishes for chronically ill

children) and they suggested a laptop computer to keep his hands agile.

This has been marvellous as he now can send a lot of his work via the

internet as his hands go into spasm and he can't write. I notice there

are a few teenagers amongst the group and wonder if any of them write to

each other as I know it would probably help Jordon to understand what

others are going through. I don't feel he is as severe as a lot of the

ones on here, but with this dreaded illness we really need support and

understanding from others in similar situations. The treatments in

Australia are a little different to America, so some of it I am still

trying to learn.

Anyway, looking forward to getting to know each of you.

Donna and Jordon (15)

[Guest guest]

Hi Donna,

bless your heart for what you and your family have gone through. I

haven't read any other replies yet, but would like to encourage you

that what has negatively happened to you with meds, will not

necessarily happen to your son. The last 5 years have had more

breakthroughs in treatment than probably the previous 20 or 30

years. I would encourage you and your son to continue to

investigate all the meds and alternatives. I worry that non-

treatment or non-aggressive treatment may be worse off for your son

than the worry of side-effects. I don't know all your details, but

don't let him give up on himself.

My son is only 8 1/2 and has not been given the keys to email and

the internet yet, so wouldn't be a good candidate to correspond

with. I'm sure there are others here that will pipe in.

Stacia and Hunter, 8 systemic, iritis

[Guest guest]

Ashlee,

You did yourself and your family a huge benefit by going to the AJAO

conference and I can't say I know if we met. We're " systemic " and

probably were at different breakout sessions. It was our first,

also, after being " finally " diagnosed last fall. You know already

that Liz has tons of experience and her family members are " movers

and shakers " in the Dc area.

Welcome to the list.

Stacia and Hunter 8 systemic and iritis

[Guest guest]

I'm not sure if I met you or not either. My little girl was almost 2 when

we went. Her 2nd birthday was the day after we came home. I was amazed at

home many people were there. Other than you all on this list I don't know

of any other children that have had JRA. None in my family and no one in my

family even knows of anyone and I have a HUGE family and my husband does

too. Everyone was shocked to know Madison has JRA and they have been SOOOOO

supportive. Especially our parents.

Thanks for the reply and how is Hunter doing? My husband loves the name

Hunter and actually wanted to name our daughter Hunter. I said let's wait

to see if we have any boys! :-)

Thanks!

Ashlee and Madison, 2, Poly

Re: Introduction

Ashlee,

You did yourself and your family a huge benefit by going to the AJAO

conference and I can't say I know if we met. We're " systemic " and

probably were at different breakout sessions. It was our first,

also, after being " finally " diagnosed last fall. You know already

that Liz has tons of experience and her family members are " movers

and shakers " in the Dc area.

Welcome to the list.

Stacia and Hunter 8 systemic and iritis