Kim

[Guest guest]

SARAH,

My doctor is Dr. , but we only just went to him last week. I have

never been to a conference, but he is a great doctor.

Kim

[Guest guest]

Kim,

Our doctor is DR as well. We really like him. We started out with DR

Pachman, but she wasn't right for us as I ask too many questions and she

always seems in a hurry. Also she writes a lot of papers and likes to have

'clean' patients. We do some alternative therapy stuff which she can't

stand. DR although he wouldn't do the alternative stuff himself,

doesn't hate me for it! He is open to discussion and it is me more recently

taking the lead in the medication schedule for our daughter . He

cautions where necessary but seems to be letting me take the lead on

suggestions. Things are going well so maybe that's why. Where do you guys

live? We live in ton.

[Guest guest]

,

We just moved to Wheeling. I teach in Glenview and we are going to be

visiting Dr. Klien(?) at Glenbrook. I liked Dr. a lot but Children's

Memorial is far for us. So far, Casey has been doing OK, but I am calling

dr. on Monday because I know this Naprosyn is not working.

Wow, someone so close to us...sometimes when youare using the internet,

you think that the people you are talking to are so far away. weird, huh?

Is emily your only child? Casey is ours...

Thanks, Kim

[Guest guest]

You know we were gong to start going to Glenbrook too, as it is closer but we

like DR so much that we are prepared to make the trip down town. We

have a small daughter Molly who is two and I have two grown up step children.

There is another person on this list N who liver in Northbrook. Her

daughter is doing really well at the moment so she may not be checking this

mail. Are you out there ?

[Guest guest]

Hi ,

Yes I'm out here but lurking. My husband's mother is gravely ill right now

(in fact at this point she's not expected to make it 24 hours) and I've been

helping with her for the last while. Grace is doing splendidly. She's just on

the naprosyn now and in two weeks we go for another blood test. If that comes

back looking good, we'll try her on no meds at all and see how it goes. How's

? I read that someone, Kim(?) lives in Wheeling which is close to us.

Maybe we can all get together for lunch sometime.

N.

[Guest guest]

That's a great idea. I would like you to meet unmediated so you can

see the huge difference! As things are heading it may be the new year. we

will be in Utah skiing for a month over Christmas and then in the UK visiting

my folks at the end of Jan so maybe in Feb. Let's try to remember. I'm so

glad to hear Grace is doing well. How many normal blood tests has she had

now? And how often does she go to the Doctor? Has she been sick with any

thing else and if so did she get better in the normal time? I'm sorry to hear

about your husbands Mother, I hope your family will stay close and support

each other at this time.

[Guest guest]

,

Well, I will let you know how Dr. Klein is at Glenbrook. Friday we go to a

ped. GI for casey's weight problem. I hope they will give us some insight.

She never likes the same foods twice...weird. If I don't feel comfortable

with Dr. Klein we will be going back to . He actually called me back

and knew casey's history before he called me. I like that.

Kim

[Guest guest]

, That sounds great. I am in Wheeling...let me know.

Sorry to hear about your mother - in - law.

Kim

[Guest guest]

Kim

I have dealt with DR Klein a few times and she too is very nice, I just have

dealt more with DR and I think we work well together. Yes, that is odd

about Casey not liking the same food twice. What happens? Does she eat say

lasagna once then the next time says " YUK " or do you mean she'll eat cheese

once then never again in any shape or form? How do you handle it?

[Guest guest]

,

Casey will eat lasagna once and the next twice she will be repulsed by it and

gag on it if I make her eat it.

We went to a nutritionist yesterday and they gave us some guidelines to

help her eat. But she is classified as malnourished now and they are doing

some tests to make sure its not a bowel disease. Next step if she doesn't

eat, is to feed her through a tube. She has completely forgotten how to eat.

It is strange because we give her so many different foods and it doesn't

seem to make a difference.

Kim

[Guest guest]

What I'm trying to find out is whether if she eats lasagna whether it's the

ingredients or the configuration. I mean if you gave her spaghetti Bolognese

instead of lasagna would she eat it? Or simply after she's had pasta, meat,

tomato sauce and cheese will she never again eat any of those things in any

configuration. It could be that she quickly has become allergic to these

foods and her body knows it and so she can't eat it? Have you had her tested

for food allergies?

[Guest guest]

,

I have severe allergies, so we have been on watch since she was born. No,

this is more like she will eat spaghetti, lasagna, or any configuration if

she is in the mood. I don't think it is food allergies, and it's not

pickiness, I think honestly she is starving and then she gets takes a few

bites and gets nauseous. Then if I try to give to her the same food again

soon, she associates it with not feeling well. I might be wrong, but some

days she eats and some she doesn't and it doesn't seem to have anything to do

with food, time, mood, medicine, or any correlation I can see. Suggestions?

Kim

[Guest guest]

Regina,

Thanks for your input.

I think that I will try to treat her as if she has one of those as well. I

am afraid, though, to make any mistakes, but your right...casey would pull

the tube out as well. At the hospital she pulled the blood test needle out

with threee people holding her. She's a tough cookie.

If I have any questions, I'll ask

KIM

[Guest guest]

Hi Kim,

my daughter (polyarticular Arthritis since she is 13 months old)

was down from 21 lbs to 16 lbs in Januar 1999 - starving herself too. If

she ate a couple of teaspoon, she would eat alot. Our Nutrionist suggested

to put her on a high fat diet and that reinforced her to eat even less. She

was at that time taking Motrin 4 times a day and also Methotrexate once per

week and folic acid every day and than there was also Zantac.

Our doctor suggested to feed her via tube too. But I knew that as long as

would have the strength she would pull it out again. So than our

doctor suggested to feed her via tube and sedate her and that was that for

me. I read up on stomach illnesses in the libary and fed her like someone

with a gastritis or liverillness. Nothing with too much acidity and low fat

(expect her milk intake) - so nothing fried or smothered in high fat or only

small quantities of high fat items. (Like a small slice of cheese and a

banana). Slowly she recovered and was able to eat more and larger amounts.

I never fed her leftovers within a day or two - she would also refuse to eat

them - I started to freeze them and give them 5 -6 days later to her (which

worked out well for a quick meal).

In the meantime, we have been with her to an Naturopath and now she bugs me

continously for food.

Well all the best to you and if you have anymore questions, feel free to

contact me.

Regina

>From: Squirt324@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Kim

>Date: Sun, 14 Nov 1999 14:10:49 EST

>

>,

>I have severe allergies, so we have been on watch since she was born. No,

>this is more like she will eat spaghetti, lasagna, or any configuration if

>she is in the mood. I don't think it is food allergies, and it's not

>pickiness, I think honestly she is starving and then she gets takes a few

>bites and gets nauseous. Then if I try to give to her the same food again

>soon, she associates it with not feeling well. I might be wrong, but some

>days she eats and some she doesn't and it doesn't seem to have anything to

>do

>with food, time, mood, medicine, or any correlation I can see.

>Suggestions?

>Kim

>

>------------------------------------------------------------------------

>Visit my homepage for a list of sites with info on childhood arthritis:

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

><< text3.html >>

[Guest guest]

Kim,

Dawn is correct. There's a very slight, around 0.2% chance of developing

agranulocytosis, and it most always occurs in the first 4 weeks of therapy.

The white blood cell count does normally decline in Graves' disease so it's

good to have a baseline level for comparison. Graves' disease is associated

with a decreased number of T suppressor lymphocytes and also Natural Killer

lymphocytes, the white blood cells that normally would stop autoantibodies

from being produced. And although your B lymphocyte cells are hyperactive,

they're not increased in number.

Also, congestive heart failure, when it does develop, usually occurs in the

elderly.

[Guest guest]

Welcome to the group Kim. My name is Genny and my daughter, Jodi 27 yrs. old

was diagnosed with AIH in Feb. and was put on the transplant list this week

at the University of Miami.....You will find a lot of good information here

but most important good friends. I don't know what I would do without these

people. Write as much as you like and be prepared to receive a lot of posts

from the group. I couldn't believe it when I first got on, it was hard to

keep up but you just have to skim over the titles and read what interests you

or is directed to you. Other wise you will be online all day. LOL Will be

looking forward to getting to know you better. Take care and God bless.

[Guest guest]

Hello Kim, and -

I am new to this list and was also very impressed with your attitudes

about healing and HCV. I am a Naturopathic Physician (N.D) who has just

graduated from a 4 year medical program in natural medicine at NCNM who just

happens to have HCV too. I've had the virus for over 20 years - and had a

biopsy done 2 years ago - everything looked very good. The doctor told me

that what ever I was doing - keep doing it.

I too am convinced that health is our goal, not necessarily killing the

virus at all costs. I believe that one can live a very healthy and happy

life with HCV. However, there are lifestyle changes that need to take place

( eg: organic whole foods diet, exercise, clean water, meditation, no

alcohol, no smoking, etc.). Nevertheless, I really believe that one has to

find something in life that is meaningful to them and to pursue it with all

their heart. Having joy, laughing, and enjoying life is critical to health -

if we can't have that we can't truly be well. Thankyou for your thoughts.

Best of health to all of you.

Connie , N.D.

Denver, Co

[Guest guest]

Connie as a ND could you tell me what you know about hepatico? I know I have taken it for over 2 years and am having NO effects from HCV as I had before I started It. Please let me know as allot of times this is great info for allot of us. If your wondering YES I do believe in it allot but would like to know if you Know more about it.

R.R. Norman Life should not be measured by the number of breaths you take, but rather, by the number of events that take your breath away."

Toll free - 800-535-7502 ravensara [ravensara@...] http://www.hepatico.com ICQ #105879970

-----Original Message-----From: ndbliss@... [mailto:ndbliss@...]Sent: Thursday, August 02, 2001 9:24 AM Subject: Re: [ ] KimHello Kim, and - I am new to this list and was also very impressed with your attitudes about healing and HCV. I am a Naturopathic Physician (N.D) who has just graduated from a 4 year medical program in natural medicine at NCNM who just happens to have HCV too. I've had the virus for over 20 years - and had a biopsy done 2 years ago - everything looked very good. The doctor told me that what ever I was doing - keep doing it. I too am convinced that health is our goal, not necessarily killing the virus at all costs. I believe that one can live a very healthy and happy life with HCV. However, there are lifestyle changes that need to take place ( eg: organic whole foods diet, exercise, clean water, meditation, no alcohol, no smoking, etc.). Nevertheless, I really believe that one has to find something in life that is meaningful to them and to pursue it with all their heart. Having joy, laughing, and enjoying life is critical to health - if we can't have that we can't truly be well. Thankyou for your thoughts.Best of health to all of you. Connie , N.D.Denver, Co

[Guest guest]

Kim:

To get into the " website " I go to www. and sign in with my id

and go to my groups. Pick the group (in case you belong to

more than one). Once there you can edit your membership and ask for all

emails, or just one with all the info for that day, or none. If you choose

none you can still look at the emails, but you have to be at the site (which

is where you'd be at that time). When you go to look at the emails

(archive) you can search them for a particular word (eg. if you're looking

for references to a particular drug you can search for that).

Does this help any? I hope so.

>From: " Kim Stagliano " <stag@...>

>Reply-

>< >

>Subject: RE: [ ] Stealth virus as marker Contraindicating

>Vaccines

>Date: Thu, 28 Feb 2002 10:31:06 -0500

>

>Please please please stop this " party line " ! Why do I get every email you

>all send to eachother. I'm interested in the topics as they relate to my

>situation but I don't want to read every single thought you have!!!!!!! I

>want to get into your website and cull the information I need. I can't get

>28 emails a day from you!

>

>Arnold, are you in charge of this site? Who the heck is Tracey???

>

>Kim

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Thanks a million! I love the information but don't need to see everything.

Kim

RE: [ ] Stealth virus as marker Contraindicating

>Vaccines

>Date: Thu, 28 Feb 2002 10:31:06 -0500

>

>Please please please stop this " party line " ! Why do I get every email you

>all send to eachother. I'm interested in the topics as they relate to my

>situation but I don't want to read every single thought you have!!!!!!! I

>want to get into your website and cull the information I need. I can't get

>28 emails a day from you!

>

>Arnold, are you in charge of this site? Who the heck is Tracey???

>

>Kim

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Kim:

Never mind, I found a website on it... What You Need to Know About Benign Hypermobility Joint Syndrome or www.cchs.net/health/health-info/docs/

Rob can only do a few of those things. What did they say about Logan? Do they think he has it in addition to JRA?

and Rob 13 jas

[Guest guest]

Kim: Thanks for the info. I do think that you can download a newer version of Windows fairly easily from the Microsoft site. Anyway, that is a very interesting dilemma...the hypermobility versus the JRA.

Rob is having another bad day today. He woke up with a sore throat, off to the ped and strep screen negative. Probably viral. His back is giving him fits today...he insisted on getting in our hot tub outside though its almost 90! I only would let him stay in for 15 minutes and made him drink water the whole time! But he said it felt wonderful.

Anyway, best wishes to you and Logan. Hope that rain doesn't spoil his feeling good!

and Rob 13 jas

[Guest guest]

,

Whew,,,thank goodness you found the website,,because I am not very

computer literate. I bought a scanner at a garage sale,but my computer

only has Windows 95,and I need Windows 98 to run it. Yes,they think Logan

has it in addition to jra,,,But I get the impression,from what I

read,that the pain from having hypermobility,could mimic the pain of JRA.

I guess,we will have to wait and see,,I'm going to call my regular

pediatrician on Monday and ask what he thinks. He has been very close to

Logan his entire life,,so I really trust his opinion. I have always

noticed Logans doublejointedness (is that even a word?) but I never knew

it could be a problem. I did think that it could cause problems with

holding a pencil,cause his thumb is so doublejointed,that it kinda goes

out of place when he grips real tight. Hard to explain,,you would have to

see it.

Anyway,,hope Rob is doing well this weekend. I think it is about to rain

here,so hopefully Logan will still be pain free in a few hours.

Kim and Logan 5

[Guest guest]

,

I am praying that Rob will start feeling better soon. Thank goodness

it wasn't strep. I don't know if you read my earlier post about strep and

Logan,,but the Dr is emphatic that he not get it again. I will be worried

sick everytime a kid gets it this year in school.

I read that you asked Rusty about Juno. I just changed from AOL to

Juno,,and I love it. It is only $10 a month and I think you can pay every

6 months,by credit card,or by check. It is so much cheaper than AOL,,and

you can keep your AOL instant message.

Logan still feels well today,so thankfully the rain didn't do anything.

By the way,,how long has Rob had JRA,,and what kind does he have?

Kim and Logan 5

[Guest guest]

Kim:

I was so glad it wasnt strep either. They think it is a virus. Now his nose is pouring and he is pretty much miserable. His glands in his neck are swollen and painful too.

So glad Logan is feeling well today. I'll be praying that he doesn't get strep again!

I think I will like Juno. I have had AOL so long though (about 5 years) that it is different...but wow, the cost savings. I do need to set up Rob his own email account, I got instructions on how to do that.

Rob has juvenile ankylosing spondylitis. It started in his hips. He has fluid in both hip joints. He also has lost the natural curve in his lumbar spine. He has some pain in his ankles and in his jaw on one side. He woke up one morning this past March and couldn't walk. that was the 10th. Got into the ped rheumy on 3/28, got the definitive diagnosis on 5/9 so he was diagnosed pretty quickly. We did not click with the local ped rheumy, the only one in the area, so we switched to Shriner's in Lexington Kentucky (we live in Indiana just across the river from Louisville, Kentucky where I grew up) and are much more satisfied with the doc at Shriner's. Rob has had chronic asthma since he was a year old. We also found out 2 weeks ago that he has osteoporosis. So now he is on meds for asthma, JAS and osteoporosis. I have trouble keeping up with all of them. We go to the ped endocrinologist on 8/30 to see why he cortisol level is so low, it is likely due to his being dependent on his steroid inhaler. We are trying to wean that now.

When I heard that you had rain, I was a little jealous...it is dry as a bone around here, and sooooo hot...in the Ohio valley, the air just sits. Bad for asthma, but that rain makes those joints ache...

Wishing all of you a good night. Glad Logan is doing well. Take care.

and Rob 13 jas