New to the Group

[Guest guest]

Hi welcome to the group!! I know what both of you are going through!!!! I'm

21 and I have both pcos and pa, luckily my husband is healthy though!!! but

I do know how you both feel, it's great that you've got each other for

support though. There are also some very good groups for support when you've

got pcos.

Lots of love, xxx

[Guest guest]

Dear , Welcome to the group. I hope you find it as supportive and

informational as I have. Our daughter, n age 12, was diagnosed with

systemic JRA at age 10. It seems as if we have had lots of new people,

whose children have systemic, recently discover this listserve. n is

relatively active and is in school fulltime. She is still a bit stiff in

the morning, and the arthritis kind of moves around, but is nothing like it

was at onset. Her fevers left a long time ago, but she had the rash for 18

months. n is on naprosyn and plaquenil. Welcome,

>From: chrisujohnson@...

>Reply-

>

>Subject: new to the group

>Date: Mon, 02 Apr 2001 02:36:34 -0000

>

>Hello,

>

>I am excited to find such a supportive site. My son Cameron is 11 and

>was diagnosed 5 years ago with systemic jra. He has been on every

>medication, conventional and otherwise, for arthritis, all with

>little or no significant results. He has a good team of physicians

>and therapists who do their best to keep him limber and active. He

>deals with his medication and therapies with courage and a sense of

>humor. He is currently on growth hormone, since the years on

>prednisone and chronic inflammation stopped his growth. Is there

>anyone with experience with growth hormone?

>I'm glad to be able to participate, and am looking forward to hearing

>from all of you.

>

>christine

>

>

>

>To manage your subscription settings, please visit:

>

>

>For links to websites about JRA:

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

>

>

[Guest guest]

Dear Chrisitne, welcome to the group.My son age 10 has a history

similiar to Camerons. he was diagnosed 5 yrs ago with systemic jra has been

on prednisone ever since. H e has stunted growth ( he is 4 ft tall) we will

meet for a second time with the endocronologist in June to look into growth

hormones. The Dr did a bone scan of his hand and said his physical age is 6

yrs old and chronological age is 10..any info or feedback you could give me

on your experience with growth hormones would be greatly appreciated.. Thanks

Jane Conlon

[Guest guest]

>Dear Jane, For the first 21/2 years Cameron was on a pretty high

dose of steroids daily. He also had mega-doses of steroids IV when

he was hospitalized with flares. The steroids seemed most beneficial

in reducing his fever, but the other symptoms did not seem to get

bettter. He has been off steroids now for close to 3 years. He

started on growth hormone last August. He had not grown in height or

weight, and at age 10 was just over 4 feet and still fitting into his

size 6 first grade clothes. Since he started on growth hormone he

has grown about 3 inches. His doctors were unsure if his active dz

would interfere with with the effectiveness of the growth hormone, or

if other complications would arise. We found that both Cameron's

rheumatologist and endocronologist had little experience with g.h.

and jra, and were both skeptical of the results. So far though,

aside from the daily injections, there has been no negative effects.

Good luck, I hope growth hormone can benefit your son, too.

christine

[Guest guest]

: Welcome to the group and I pray you find the support my family

has found here! My daughter was also diagnosed when she was 6 years old.

Keep in touch.

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

Lynn-

What's your little girl's name? I too have a two-year old daughter. She's

currently in remission -- since November. I am surprised your doctor told

her to limit her activities. That's exactly the opposite of what 's

doctor has always advised. The more active the better. Re: things to do to

help: heat. Warm baths, heating pads, whirlpools, swimming. How long ago

was your daughter diagnosed? What meds is she on? If they aren't working,

maybe it's time to try something else. It is hard to see such a little girl

not able to do all the things a 2 yr old should be able to do. Best of luck

to you and your little girl.

Diane

[Guest guest]

Dear Lynn, bless you and your child, my heart goes out to yall..i am sorry

but in my opinion let your child play. believe your child will let you know

when it is time she can't play. a child is pretty smart even for a 2 yr. old.

my opinion also is for you to get to a childrens hospital or a shriners. i

was lucky to find good doctors at childrens hospital in pittsburgh when my

16yr.old was diagnosed with it back in 1989. warm baths help with

pain..please make sure your doctor is an expert in this field.....karen

[Guest guest]

Hi Lynn G:

I'm Lynn also, mother to a now 7 year old with systemic onset jra. She

started with symptoms at 2, wasn't diagnosed until 3.

I found lots of warm/hot baths helped, we ended up getting a hot tub because

of how often we were filling the bathtub! Gentle rubs with massage oil or

baby oil helped too, but stress the gently. A back or body rub, not

necessarily the hurting area. Luckily for me, Mickey has always loved to

have stories read to her, so we did a lot of that. In the time between when

Mickey's arthritis started and when it was diagnosed, she became very

lethargic and hardly ate, so excess energy wasn't exactly her problem. We

got her into swim lessons to, and that kind of activity is easy on the

joints but also very strengthening, which helps to support the joints too.

Swimming has been a lifesaving sport for us/Mickey - she loves it, which is

a blessing, and it is really good for her, one of the few activities her

docs really encourage. With pools in most communities, its should be easy to

find a swim program, even for your daughters age.

When Mickey gets physiotherapy to help with the contractures, etc, they do

it in a small deep pool/tub with her. She loves it, they make a game of lots

of the exercises. We've been pretty lucky finding really kid-oriented

programs and people.

If I think of anything else, I'll write again.

Lynn

From: " Lynn G " <Lyn2574@...>

Reply-

Date: Wed, 20 Jun 2001 20:58:15 -0000

Subject: new to the group

My name is Lynn and I have a 2 year old little girl who was

diagnosed with JRA or at least that is what they told me they thought

she has.At the begining it was just in her knee but last week it

moved into her ankle also.I am still in shock about it all,I mean I

had no idea that children could get this.Anyway the meds they have

her on do not help very much and I was wondering if anyone could tell

me anything I could do for her to make this a little less painful for

her.Her doctor did tell me to start limiting her activities but it is

hard to explain to a 2 year old why she can't play like her

brother.Anyway any help would be greatly appreciated.

To manage your subscription settings, please visit:

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[Guest guest]

Hi Lynn

My son 6 has systemic JRA that was just diagnosed in April.

Our short experance with this is limited but We were told by his Dr. to

let him do all the normal activities playing etc. ryan will know if it

hurts to much and stop.

We have found that if he plays extremly hard one day that the next day he

is usaly a little extra sore and takes a few hours in the morning for the

meds to kick in.

Good luck with all this, and keep reading this site there are alot of

people that will answer almost anything and offer alot of support.

--- Lynn G <Lyn2574@...> wrote:

> My name is Lynn and I have a 2 year old little girl who was

> diagnosed with JRA or at least that is what they told me they thought

> she has.At the begining it was just in her knee but last week it

> moved into her ankle also.I am still in shock about it all,I mean I

> had no idea that children could get this.Anyway the meds they have

> her on do not help very much and I was wondering if anyone could tell

> me anything I could do for her to make this a little less painful for

> her.Her doctor did tell me to start limiting her activities but it is

> hard to explain to a 2 year old why she can't play like her

> brother.Anyway any help would be greatly appreciated.

>

>

__________________________________________________

[Guest guest]

Thank you everyone for the suggestions. was diagnosed in Jan. of this

year.The reason they told me to limit her activities a little is because she

seems to over due it sometimes and it makes it harder on her the next day.The

swelling is always there it has never went down and the pain is constent.She

is on naprosyn and trilisate and so far it has been no help.

[Guest guest]

Hi Lyn G,

33 years with jra, and I agree with -6, dad, don't try to hold

her down, she will let you, know when the pain stops her from wanting to

play.

Any manner of exercise her derives from playing is beneficial . Kids, are

VERY smart people! More often, I believe them, to be the Intelligent

ones, and we are all learning from them!

Or should be!

Morse

[Guest guest]

My daughter is starting methotrexate next week. How do I go to the

groups and look are articles Georgina or others have posted regarding

methotrexate?

From what I have read on this list, it seems the children tolerate this drug

well with few side effects. What in your opinions have the outcomes been

for your children from this drug. My daughter is 4 (diagnosed in Jan 2000)

and is pauci onset with the arthritis in both knees and ankles. She had

cortisone in November which is now wearing off as her sed rate is elevated.

We have tried sulfasalazine and it is obviously not helping so the

rheumatologist wants to go to the methotrexate.

Thanks

Chris

Re: new to the group

Thank you everyone for the suggestions. was diagnosed

in Jan. of this

year.The reason they told me to limit her activities a

little is because she

seems to over due it sometimes and it makes it harder on her

the next day.The

swelling is always there it has never went down and the pain

is constent.She

is on naprosyn and trilisate and so far it has been no help.

To manage your subscription settings, please visit:

For links to websites about JRA:

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

[Guest guest]

Chris-

I'm so sorry to hear Nikki is hurting again. Most kids do have good luck

with mtx. I know there are lots of good posts on the subject. I just tried

accessing the site. I have yet to figure it out since took it over.

You can get to the home page by typing in key word " jra list. " Then you need

a password and id number. This is where I keep getting tripped up. I can't

remember if I have one and forgot it or need to create one, but everytime I

try, the server is " busy. " Anyway, once you get in, there's a list of

archives. There's lots of them, and they're by date and have the subject

line so you can just look for the topic you're interested in. Best to Nikki.

How's your little one doing? All's well here. We're going to visit family

in the Burgh in a couple of weeks. Hope the weather improves--I hear it

hasn't been too nice!

Diane

[Guest guest]

Hope this one gets to the group

Hi Everyone,

My name is Lynn. I was diagnosed with hepC May of 1995. Was on Intron for three years and another ten months on combo. I did become negative for one year during treatment. But three months after I stopped treatment the virus returned. My doctor did not continue my treatment. He said we will wait for the Peg. So I was off treatment for 2 years. Now I am on the Peg. Also have been on transplant list for the past two and one half years. I have one married daughter Lori, seven year old grandson , married son and married son . Two years ago I met my now husband on a HepC support group. We live in Palm Springs CA. and enjoy going camping at the mountains in Idyllwild CA. We are leaving tomorrow morning for Idyllwild. The weather is cool and beautiful. We try and get up there every other weekend during the summer months. As the desert is very hot.

I enjoy, my children and there families, sharing living with HepC with others, attending a HepC support group, my Internet friends, crafting, meditating, music, reading, swimming, renting movies, favorite foods when dinning out Japanese and Chinese. I spend a lot of time in the house drinking lots and lots of water and eating healthy (most of the time). I am very tired since my liver is compensated with sever fibroses and cirrhosis.

Hope you all have a nice day.

Love,

Lynn

Friends are the flowers in the garden of Life.

[Guest guest]

Hello Lynn am Jan and have been with the group for a couple of months. I am on Rebetron/Intron combo and it is hard on me. It isn't always hard on evryone but it sure is putting a tol on me. I am trying to stick with it though for a while longer. I look at it like this. If it gives me 3 more months with my kids and new hubby it is worth it. I don't like for my hubby to see me go through so much but he is a very understanding man. Thank God I found him when I did. He came in my life when I needed someoine the most. Anyway I want to welcome you to the group. It is a pleasure and please contact us on a regular basis. We'd love to hear from you.

PEACE & LOVE FOR ALL

[Guest guest]

Hi Lynn,

I am so Happy to see that you made it here...... You will add a lot

of sunshine to our group.....

Missed you Lynn,

Love,

Diane

[Guest guest]

Hello Lynn . . . I am SJ . . . I contracted HCV back in 1987 from bad blood during surgery at the VA hospital in San . I have yet to begin treatments. In fact, I had surgery in 1998 (repaired flap between esophagas and stomach due to reflux, Barrett's esophagus, hiatal hernia, and gall bladder removal - believe it or not they are almost all inter-related) and the surgeon performed a biopsy on my liver at that time.

He said in my medical records and I quote:

"Examination of the liver needle biopsy shows a lobular architecture of the liver. There is some distortion of the pattern by mild to moderate fatty metamorphosis located primarily within the periportal areas. Several portal tracts are identified which show an increase in inflammatory cells of a mild nature. The limiting plate appears to be intact and no piecemeal necrosis is identified. Bile ducts are identified and show no evidenve of cholestasis or bile plugs. In the parenchyma, focal areas of inflammation of heptaocytes can be seen. Bile plugs or cholestasis is not identified within the hepatocytes.

Diagnosis: Mild Chronic Triaditis and Fatty Metamorphosis"

I have not had a biopsy since. I am now finding out what tests I've taken, what I need to take, and whether or not I want treatment at this time. I saw a heptologist at IUPUI approximately a year ago and he told me that I should hold off treatment, as there were new and better things coming down the pike and since I wasn't sick, he told me to wait 5-6 years.

I have since been in contact with a colleague of his that is also a heptologist and works 2 days at the VA hospital in Louisville . . .

At his site he writes:

The National Library of Medicine is the best medical resource on the Web with 10 million medical articles including nearly 95,000 articles about hepatitis. It is updated daily. Just type what you want and get the latest medical information on any topic. www.ncbi.nlm.nih.gov/PubMed/  

I joined this group (well not exactly this very same group) a few months ago and I have made some very special friends with lots and lots of support. Nice to have you here, Lynn . . .

Always,

Sally Jo

P.S. No, I am not a recruiter for Dr. Cecil. LOL Just in case you wanted to know. I just really think he is a man behind his words and truly cares for his patients.

[Guest guest]

Hi Lynn

Welcome

Your messages seem to be coming through ok.

[ ] Fwd: New to the group

Hope this one gets to the group

[Guest guest]

Hi ,

I have not seen one message from Lynn...All I saw was the welcome

message to her...Nothing that she has posted......

[Guest guest]

That is strange I got one this morning. It had an attachment with her

Introducing herself. I went to the site and found it. Msg # 142

Re: [ ] Fwd: New to the group

> Hi ,

> I have not seen one message from Lynn...All I saw was the welcome

> message to her...Nothing that she has posted......

>

>

>

[Guest guest]

I know I introduced myself, but as far as sides from

the tx, they seem to come and go for me. I was very

sick for the first few weeks, then much better, then I

started getting worse again, lately I've been feeling

pretty good, mostly tired. I am in my 24th week of tx.

-dz-

--- Jannewilms42@... wrote:

> Hello Lynn am Jan and have been with the group for

> a couple of months. I am

> on Rebetron/Intron combo and it is hard on me. It

> isn't always hard on

> evryone but it sure is putting a tol on me. I am

> trying to stick with it

> though for a while longer. I look at it like this.

> If it gives me 3 more

> months with my kids and new hubby it is worth it. I

> don't like for my hubby

> to see me go through so much but he is a very

> understanding man. Thank God I

> found him when I did. He came in my life when I

> needed someoine the most.

> Anyway I want to welcome you to the group. It is a

> pleasure and please

> contact us on a regular basis. We'd love to hear

> from you.

>

> PEACE & LOVE FOR ALL

>

__________________________________________________

[Guest guest]

I am so sorry to hear about your brother. Did they say what type of

hepatitis your brother has? Here is a brief explanation of

cryptogenic cirrhosis and what it is:

Cirrhosis is usually an easy diagnosis to make when any or all of the

above abnormalities and complications are present. This is especially

true when the underlying liver disease can be identified. The

underlying liver disease (see below) is identified in most patients,

however, sometimes it will not be discovered. Such cases are

called " cryptogenic " cirrhosis.

Here is the link that the above passage came from.

http://cpmcnet.columbia.edu/dept/gi/cirrhosis.html

If the docs are just telling your brother he has cryptogenic

cirrhosis, what they are saying is that they don't know what he has.

You said he is stage 3? Do you mean his liver biopsy was stage

3? ...or do you mean Status 3 in his ranking for liver transplant?

The good news is that either way, stage 3 on a biopsy and status 3 on

the liver transplant list is a good thing. Status 3 is the highest

that a person can be....a person that is status 1 life expectancy is

less than 7 days.

You can be status 3 for years and years....some people are fortunate

and never even move from Status 3 to 2B. A person usually doesn't

even move from status 3 to 2B until after they have had GI bleeds

that are very difficult to control and have to have surgery to

control it(shunts put in, etc). I know people that have been status

2 for years.

The best thing you can do for your brother is be supportive and

patient. You will find, if this hasn't started already, that he will

become angry and or depressed from time to time. This is very common

with Hepatitis. In fact Hep C is called the angry hep. To put it

simplistically, what happens is that the toxins from the liver are

going to the brain and just making things a mess.

I'm not sure what hep sites you have gone to on the internet but here

are some very good ones;

http://hepatitis-central.com/

http://www.hepatitisneighborhood.com

God Bless you and good luck!

> Hello all.

> My brother was recently put on a transplant list at Pittsburgh's

> Presbyterian Hosp. I am at a loss as to how to help him. He is

stage

> 3. Cryptogenic cirossis (spelling?). I don't understand where it

came

> from. By the way, I had cataract surgery in Feb and Mar of this

year.

> I am 43. I would like advice on how to best help my brother - our

> parents are no longer around for support. Thanks in advance for any

> advice you can give...

[Guest guest]

Thank you so much for the information. You made me

feel much better. He is status 3 for a liver

transplant. I worry that the surgery is very risky,

and he seems to be able to function at this time. He

is still working, but he does seem to get confused

from time to time. I have repeatedly asked him about

the hepatitis, but he denys having it. I don't know

whether he is worried that there might be some kind of

stigma attached to hepatitis, or he honestly thinks

something else caused the liver failure. I am in an

awkward position because I certainly respect his

privacy, but I know that there may be a time where I

may have to intervene with his decisions. Especially

when I feel confusion from him. He has asked me to

accept his medical power of attorney, but he has not

produced the paperwork yet. I don't know if that will

give me the right to question his doctor, or if I will

need the durable power of attorney, and at what point

to get them...I know that they 'scoped' his stomach,

and found varicose veins (wrong phrasing I'm sorry).

--- Whatnot12345@... wrote:

> I am so sorry to hear about your brother. Did they

> say what type of

> hepatitis your brother has? Here is a brief

> explanation of

> cryptogenic cirrhosis and what it is:

>

> Cirrhosis is usually an easy diagnosis to make when

> any or all of the

> above abnormalities and complications are present.

> This is especially

> true when the underlying liver disease can be

> identified. The

> underlying liver disease (see below) is identified

> in most patients,

> however, sometimes it will not be discovered. Such

> cases are

> called " cryptogenic " cirrhosis.

>

> Here is the link that the above passage came from.

>

> http://cpmcnet.columbia.edu/dept/gi/cirrhosis.html

>

> If the docs are just telling your brother he has

> cryptogenic

> cirrhosis, what they are saying is that they don't

> know what he has.

> You said he is stage 3? Do you mean his liver

> biopsy was stage

> 3? ...or do you mean Status 3 in his ranking for

> liver transplant?

> The good news is that either way, stage 3 on a

> biopsy and status 3 on

> the liver transplant list is a good thing. Status 3

> is the highest

> that a person can be....a person that is status 1

> life expectancy is

> less than 7 days.

>

> You can be status 3 for years and years....some

> people are fortunate

> and never even move from Status 3 to 2B. A person

> usually doesn't

> even move from status 3 to 2B until after they have

> had GI bleeds

> that are very difficult to control and have to have

> surgery to

> control it(shunts put in, etc). I know people that

> have been status

> 2 for years.

>

> The best thing you can do for your brother is be

> supportive and

> patient. You will find, if this hasn't started

> already, that he will

> become angry and or depressed from time to time.

> This is very common

> with Hepatitis. In fact Hep C is called the angry

> hep. To put it

> simplistically, what happens is that the toxins from

> the liver are

> going to the brain and just making things a mess.

>

> I'm not sure what hep sites you have gone to on the

> internet but here

> are some very good ones;

>

> http://hepatitis-central.com/

> http://www.hepatitisneighborhood.com

>

> God Bless you and good luck!

>

>

>

> > Hello all.

> > My brother was recently put on a transplant list

> at Pittsburgh's

> > Presbyterian Hosp. I am at a loss as to how to

> help him. He is

> stage

> > 3. Cryptogenic cirossis (spelling?). I don't

> understand where it

> came

> > from. By the way, I had cataract surgery in Feb

> and Mar of this

> year.

> > I am 43. I would like advice on how to best help

> my brother - our

> > parents are no longer around for support. Thanks

> in advance for any

> > advice you can give...

>

>

__________________________________________________

[Guest guest]

> > Hello all.

> > My brother was recently put on a transplant list at Pittsburgh's

> > Presbyterian Hosp. I am at a loss as to how to help him. He is

> stage

> > 3. Cryptogenic cirossis (spelling?). I don't understand where it

> came

> > from. By the way, I had cataract surgery in Feb and Mar of this

> year.

> > I am 43. I would like advice on how to best help my brother - our

> > parents are no longer around for support. Thanks in advance for any

> > advice you can give...

The reply you received from " whatnot 12345 " was right on the money.....

cryptogenic cirrhosis is just that..... of unknown origin....

If he were to have a form of VIRAL hepatitis his docter`s would surely know it.

His being a level 3 for transplant is good as he is not in imminent danger of

liver failure... however he should be

monitored regularly and often.

There really is not much to fear from having a transplant....

I had a liver transplant in `95 at the Cleveland Clinic. They performed thier

1st liver Tx in 1986 and do around 300/yr. and have never lost a patient on the

operating table... The ! yr. survival rate is over 90%.. The survival rate of

end stage cirrhosis without tansplant is 0... My quality of life immediately

posttransplant increased a 100 fold.

You and he are in my prayers...

Jerry

transplant... `95

AIH ... `00

BTW... there are a lot of newbies ...

it would be helpful if every one signed his/her name instead of just e-mail

addresses ... we`re all friends.

[Guest guest]

Hello, . Welcome. I'm glad you're feeling better.

Harper