hello again

September 29, 1999

----------

>Patty,

Good to hear from you and glad you are doing so well.

I am currently being weaned off the pred, did you go back to " normal " when

you went off them, weight etc, any side affects still persisting?

Keep up the good health.

SueB.

September 29, 1999

Patty:

Welcome back. I am always interested in what you have to say. My doctor is

associated with UofM Center for Liver Diseases, with privileges at Cedars,

though, not Memorial.

I feel lucky to be in such good hands here in Miami.

So happy for you that you are doing so well.

God Bless,

(AIH)

September 29, 1999

Hi Patty:

My name is Debbie and I was diagnosed with AIH in 1985. I am being listed

tomorrow (Thursday 9/30/99) for my transplant. Alot of mixed emotions

there. I have been experiencing upper right quandrant pain since Sunday,

mostly in the rib cage area. It seems be a constant pain, hurting more when

I breathe in. This is not something that I have experienced in the past.

My latest labs indicate that my LFT's are in the high range (nothing out of

the ordinary there tho). I called my transplant coordinator and she advised

me that " it sounds like you should go to the emergency room " . I don't

really want to spend an entire evening waiting in an emergency and finding

out that it's really nothing to be concerned about. Has anyone else

experienced this type of pain and was it liver related?

Thanks for any input.

Debbie

AIH

Michigan

[ ] Hello Again

>From: PatJ@...

>

>Hi,

>My name is Patty and I was diagnosed with AIH in 1981, and had a liver

>transplant in 1998 at age 44. I am doing unbelieveably well at this point.

I

>followed the listserv pretty well until about four months ago when I became

>overwhelmed with the back-to-work demand. I have only read a few posts and

>have a backlog of six weeks downloaded in digest form for a rainy weekend

(or

>month!).

>

>The reason I am posting is to extend best wishes to all of you. I never

>discovered this site until after my transplant. It would have been a great

>support before, especially with the prednisone and lactulose support. I

have

>been prednisone free for over a year now. Instead I have prograf, an

>immunosuppressant drug that I'm on forever. I'll take prograf anyday. Some

>people report side effects, I experience only sleeping problems.

>

>If anyone has any transplant issues, fears and/or concerns I am happy to

>share my experiences. One real positive thing I have found, as frustrating

>and ignorant the general health care system can be about AIH (especially

>pre-diagnosis) the post- transplant system in my experience is the

opposite.

>It would be nice to be able to influence the attention to this disease.

>

>Anyway... a few thoughts. I hope to be back soon.

>Patty

>AIH Post-transplant (19 months)

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

September 30, 1999

Hi Patty:

I am glad that you are doing so well with your transplant. Like you, I

was diagnosed with AIH--in 1984--and transplanted in 1995. I am feeling

great and have a new appreciation for life. I am also on Prograf (4 mg.

daily) and haven't really had any problems with it except for occasional

gastro distress which comes on very quickly and leaves the same way. It is

such a small inconvenience to pay for feeling so well and happy. I have not

had the sleeping issue which you are experiencing. Actually, I sleep very

well--better than I ever have.

I was not aware of this support group prior to my transplant. I only

wish that I had because it could have been a great source of emotional

support to me during those desperate days. I think that we post-transplant

people need to serve as a source of inspiration to others--to let them know

that they can have a wonderful, healthy life after the surgery. It is so

hard to express to those suffering from liver disease how differently they

will feel after transplant, if in fact that becomes necessary. Patty, let's

keep spreading the good news!!!!

Bonnie P.

AIH and post transplant

September 30, 1999

Debbie,

I experienced something that sounds just like that, and went to the ER, spent

almost all night there, they checked heart/lungs, both clear. The dumb ER MD

said I must have strained a muscle. I said just below my rib cage? I don't

think so! Anyway, I later found out that it was liver pain... Best of luck

to you.

(AIH)

September 30, 1999

Debbie, Do you have any other underlying autoimmune

disorders, for example, Arthritis, Sjogrens? I have

RUQ pain and I also have rib pain. The two pains are

different entirely. The liver pain is deeper and

radiates to my shoulder blade area on the right. the

rib pain is sharp and seems to get better with

position or something like that. The liver pain isnt

affected by position and is an ache..These are my

sypmtoms mind you and I dont presume to tell you that

your pain is one of the other.. My autoimmune

disorders are flaring at the moment and Im in a lot of

pain and sleeping is just a fond memory. Hang in

there. HUGS

Jody

--- Debbie <debbie1m@...> wrote:

<HR>

<html>

From: " Debbie " & lt;debbie1m@...>

Hi Patty:

My name is Debbie and I was diagnosed with AIH in

1985. I am being listed

tomorrow (Thursday 9/30/99) for my transplant. Alot

of mixed emotions

there. I have been experiencing upper right quandrant

pain since Sunday,

mostly in the rib cage area. It seems be a constant

pain, hurting more when

I breathe in. This is not something that I have

experienced in the past.

My latest labs indicate that my LFT's are in the high

range (nothing out of

the ordinary there tho). I called my transplant

coordinator and she advised

me that " it sounds like you should go to the emergency

room " . I don't

really want to spend an entire evening waiting in an

emergency and finding

out that it's really nothing to be concerned about.

Has anyone else

experienced this type of pain and was it liver

related?

Thanks for any input.

Debbie

AIH

Michigan

[ ] Hello Again

>From: PatJ@...

>

>Hi,

>My name is Patty and I was diagnosed with AIH in

1981, and had a liver

>transplant in 1998 at age 44. I am doing

unbelieveably well at this point.

I

>followed the listserv pretty well until about four

months ago when I became

>overwhelmed with the back-to-work demand. I have only

read a few posts and

>have a backlog of six weeks downloaded in digest form

for a rainy weekend

(or

>month!).

>

>The reason I am posting is to extend best wishes to

all of you. I never

>discovered this site until after my transplant. It

would have been a great

>support before, especially with the prednisone and

lactulose support. I

have

>been prednisone free for over a year now. Instead I

have prograf, an

>immunosuppressant drug that I'm on forever. I'll take

prograf anyday. Some

>people report side effects, I experience only

sleeping problems.

>

>If anyone has any transplant issues, fears and/or

concerns I am happy to

>share my experiences. One real positive thing I have

found, as frustrating

>and ignorant the general health care system can be

about AIH (especially

>pre-diagnosis) the post- transplant system in my

experience is the

opposite.

>It would be nice to be able to influence the

attention to this disease.

>

>Anyway... a few thoughts. I hope to be back soon.

>Patty

>AIH Post-transplant (19 months)

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to

-subscribeonelist

>2.) To UNsubscribe send to

-unsubscribeonelist

>3.) Digest e-mail format send to

-digestonelist

>4.) Normal e-mail format send to

-normalonelist

>

<table><tr><td><pre>--

Please support the American Liver Foundation!

1.) To subscribe send e-mail to

-subscribeonelist

2.) To UNsubscribe send to

-unsubscribeonelist

3.) Digest e-mail format send to

-digestonelist

4.) Normal e-mail format send to

-normalonelist

=====

Jody Compton

Dance like no one is watching. Love like it will never end.

In search of answers..

August 10, 2000

Welcome back !! Nice to see that you and yours are doing well.

is now 14 and is such a little jock. His school pictures are

terrible (as usual) but you can see his lovely jock neck:))) He has PE

twice this quarter because it is his elective and he has what they call an

exploratory wheel that has all the electives in it (a quarter of each). He

also is so busy in Spec. Olympics. It is soccer season. He did swimming

and softball in the spring. He will do bowling and basketball in the fall.

Enjoy.

Elaine Mom to 16 and 14 (DS)

Hello again

> Hi,

> I thought I would pop in for a while again. I haven't been on this

list

> for about a year. I have a beautiful 12 year old daughter who happens to

> have Down syndrome. She just finished her first year of middle school at

her

> neighborhood school and had a TERRIFIC year. The best she has had in a

> long time :-) We are now a part of the puberty gang <VBG> and all that

goes

> along with that.

>

> I have also just started a e-group called diabetes plus, for parents of

kids

> who have diabetes along with another disability or a sibling with a

> disability. If you know anyone who fits this group please pass along the

> link:

> <A HREF= " diabetesplus " >eGroups :

diabetesplus</A>

>

> It's always nice to check in and see how you all are doing :-)

> Blessings,

> M.

> Mom to 15, Type one diabetes, Holly, Down syndrome, 9

>

April 8, 2001

Dear Beth,

You and Crystal are both being very brave. I don't know much

about Chiari syndrome, but my newphew had it - he was operated on at the

Cincinnati Children's Hospital and everything went perfectly and he was

home in a couple of days and back playing baseball in a couple more! My

brother and sister-in-law were really surprised at his quick recovery. So

even though it's a scary thing to have, " our " experience has been that

taking care of it has become quick and easy.

Best,

from Italy

April 9, 2001

Hi Beth

I am so sorry to hear about Crystal's situation. It must be difficult for

you to see your child going through something like this. I remember a while

back there was discussion on another scoliosis list, about this

malformation. I'm talking about two or so years back. I also found some

information at this website:

http://cpmcnet.columbia.edu/dept/nsg/PNS/ChiariMalformation.html The website

also contains information about other disorders such as tethered cord and

spina bifida which is sometimes associated with scoliosis [that as a

sidenote to other list readers].

This is a website of a seventeen year old girl who had surgery for ACM.

http://www.yvy69.ukgateway.net/

I don't know whether it will give you the answers you're looking for, but it

might help you a bit. I really appreciate that you wrote to us about it,

because it emphasizes the importance of having a complete workup before

scoliosis surgery. I'm really glad you found it before the surgery, and am

sure you are too.

Hope you and Crystal are doing well and keep us posted.

God bless,

Sanette

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

From: <dreamworksperf@...>

..........MRI of the brain and they found an

> abnormality, a birthdefect sometimes associated with scoliosis called

Chiari

> Malformation. This has to do with her brain stem protruding down into her

> spinal canal, we now have to go see a neuro-surgeon about this, her

scoliosis

> surgery is still on hold, ........

February 25, 2002

Hi Bob,

Great to hear from you : ) And I'm so happy to hear that things have been going well for Tori. It must have been very exciting for Tori to get back on the slopes again. It sounds like she has been making great strides. In the years that I have been online, I have been touched by learning the stories of so many children living with JRA. When Tori was sick last year I was so extremely worried, because I was aware of other children in similar circumstances who didn't make it. I am very glad to know that she has recovered and is responding so well to treatment, now. Thank you for the update, Bob : )

Aloha,

Georgina

PS ... You ARE kidding, about it taking three hours to put the canoe together ... right? : )

It's been a long time since I've been here, but I think of many on this board often. My daughter Tori is 9 now, and has had systemic jra since 26 months. If you recall her case from last year (MAS)I'm pleased to inform you she is doing well. In fact she is back to skiing. Down to 25mg of pred(has gone as low as 12mg) from 125mg lastyear. She is on Rhemicade once a month and seems to be responding to that nicely.Georgina, she often remembers your son and has the hawaiian canoe sitting on top of her amoire. It only took us about 3 hours to put it together! I continue to think of those here and the difficulties you face daily. I thought sharing our little bit of good news after being in the hospital last year with a life threatening syndrome may encourage others to be positive and to have hope.Stay well.Bob Skae

November 2, 2002

I shop at GNC but I never found anything close to a good

bowel cleanse there. I do find different products at

my local health food store. Each store seems to have

different products and the clerks could help you out

more.

I like GNC but their sales are geared more toward health

supplements that herbal health treatments.

Liz D.

> I posted a message and didnt see it on here I want to take all

thoes

> herbs for a clense but I afraid can anyone tell me what I cant get

at

> gnc store for all of this as i cant send away for anythin off the

> net as i dont have no more change card it got up there too high

> thanks ALOT DEBBIE FROM PA

November 3, 2002

---can ypu tell me what health store is I have gnc and drug stores

here in heidelberg pa thanks debbie

July 18, 2003

Congrats on your weight loss. Isn't it great to know we were given a

second change at life by Dr. Rutledge. Tell me more about the Unjury

protein. Thanks.

Monroe

Patient Representative

Dr. Rutledge's Office

704-682-0260 (cell)

704-871-0031 (office)

hello again

Hi all

I'm back. Some of you I know I don't know. Let me introduce myself.

My

name is a Warner, I had my MGB in May of 2000. I have reached goal

and

then have gained some back, not much. I am back into exercise and

watching

my carbs.

I have been jumping into other weight loss lists and the thread going

there

is that Atkins is back, Curves is still #1 for exercise and Unjury

protein

(www.unjury.com), excellent protein by the way. There are alot of

unhappy

folks out there in the RNY kingdom. I am so thankful I stumbled across

the

clos.net website.

Anyway, how have you all been?

aW

October 8, 2003

In a message dated 10/8/2003 12:03:39 PM Eastern Standard Time,

sjparvin@... writes:

They thought it was helpful and were not going to question whether he needs

spec ed or not which was a relief but I am skeptical about placing a child in

a K/1 class when he is immature to begin with and is more like a 4 yr old

versus 5 (next month). I know they are supposed to fit his needs and not

have him

fit what they have, but having a whole class arranged just so he can stay

preschool is not going to be easy.

Just wanted to update everyone....I'm going back to unpacking and hope to

catch up on more emails later. I had 1,000 exactly. So glad to be online

again!

Johanna

HELLO! I was wondering when you would get back on. I'm glad to hear things

are working out so far with the move!

About the placement, see if you can find some time to go visit the

classroom(s) that you are discussing with them so you can get an idea of what

they are

doing in each class. One other thing to consider is that if he is surrounded

by kids acting older, he might start to copy them??? OTOH, maybe not. Just an

idea. Go visit and see what you think fits! Oh, and if neither fit, see if

the K/1 class would fit if he had an aide.

Roxanna ö¿ö

Autism happens...

October 8, 2003

<<<<<<<Hi Everyone!!!

I feel like its been a month since I was able to email! We did the move! It

was long and my kids both stressed big time but we are through it and doing

fine. The kids LOVE the backyard and the house and I love not having to keep

them quiet (we were in a duplex). The neighbors are very friendly and the

kids

have been playing with the neighbor kids etc.,>>>

HI, Johanna !!! wow, welcome to your new home!!!!!!

may you ahve many wonderful blessings in it !!

<<<<A word of warning, however, do not ever have packers pack your home unless

you never want to find things. Every box is a mystery and I have yet to

find the nuts and the cooking utensils! I have decided that a zen lifestyle is

the way to go!!!>

that would be a good decision, darling, lol, we have moved exactly a year ago,

and I still have sealed boxs and unfound things.......

it sounds liek you are really happy about the move! great !

F

October 8, 2003

In a message dated 10/8/2003 11:47:48 AM Pacific Daylight Time,

kneeleee@... writes:

> One other thing to consider is that if he is surrounded

> by kids acting older, he might start to copy them??? OTOH, maybe not. Just

> an

> idea. Go visit and see what you think fits! Oh, and if neither fit, see if

>

> the K/1 class would fit if he had an aide.

>

Hi Roxanna & Fania!

Good to be back online.

The K/1 class would be special ed non servere, but I'm not really sure what

the heck that means...and would I want him copying an older group when he is so

immature. He is almost 5 but acts like he is almost 4.....

I just got off the phone with the parent liason person who said this was the

first year SD took the preschool and kintergarten age kids out of a program.

Now they just have preschool kids, but no classes are high functioning enough.

So they are suggesting the K/1 special ed. I'm very hesitant about all of

this. They want me to sign him up at the local school to start things rolling

and then they would find a school near us (kind of) that has a spec ed

K/1.......my only concern would be that I'd really want him to do a general ed K

class

next year. Sometimes I really want an advocate just to hold my hand and walk

me through the process. I think next year when we move again (we only get

the house for one year) it will be in the school district that has a lot of ASD

kids.....

I know the program has to fit the kid and not the kid fit the program but how

do you enforce that?

Other than this IEP blah....things are definitely much better in this area.

Even my marriage is better.....that is what a little space will do:)

Johanna

October 8, 2003

Hi Johanna,

Another thought is a private preschool placement (mainstream or

otherwise). If they don't have an appropriate placement for Joe, they

have to find one. This could include a private preschool. Our local

K and 1 put a lot of emphasis on writing and math. 1/4 of my

daughter's K class repeated, mainly the ones born in Sept, Oct and

Nov. If " young 5's " have a problem, I'd think twice about a child a

preschool age.

P.S. I was thinking of you and Liz. Our family went to San Diego from

Thursday to Monday. (One of the benefits of homeschooling is

vacationing when WE feel like it.) My daughter, Georgia, did pretty

well - we had very temperate weather and there were really no lines

for anything. She was a little cranky by the late afternoon, but I

think a typical 6 year old kid would have been with all we were

doing. She guffawed a bit loudly at the Wild Animal Park bird show,

but otherwise did fine. She definitely made the connection between

her Ape Eyewitness video and the animals at the WAP and zoo.

October 8, 2003

> Good to be back online.

> The K/1 class would be special ed non servere, but I'm not really sure what

> the heck that means...and would I want him copying an older group when he is

so

> immature. He is almost 5 but acts like he is almost 4.....

>

> I just got off the phone with the parent liason person who said this was the

> first year SD took the preschool and kintergarten age kids out of a program.

> Now they just have preschool kids, but no classes are high functioning enough.

> So they are suggesting the K/1 special ed. I'm very hesitant about all of

> this. They want me to sign him up at the local school to start things rolling

> and then they would find a school near us (kind of) that has a spec ed

> K/1.......my only concern would be that I'd really want him to do a general ed

K class

> next year.

Johanna,

It is quite possible that the sped K/1 class would be a good match. It is worth

observing the class to see what it's like. A possibility might be to attend the

sped K/1 class this year then a regular ed K class next year. Observing the

possible classes in action is probably the only way to really know if they are a

good fit.

in Massachusetts

October 8, 2003

Johanna,

Welcome to San Diego! Where is this K/1 special ed program they're recommending?

Not that

I've heard of it... I'm pretty out of the loop when it comes to early childhood

programs.

I would encourage you to observe, though. Things to look for... Does the teacher

model

good behavior? Does she treat the children with respect? Here's a website with

some

excellent questions to ask and things to look for. It's really geared toward

preschoolers, but I think it applies to kindergarteners, too.

http://www.washingtonfamilies.com/archive/choosepreschool.htm

Welcome to San Diego! When you get more settled, we'll have to get together!

Liz

sjparvin@... wrote:

> In a message dated 10/8/2003 11:47:48 AM Pacific Daylight Time,

> kneeleee@... writes:

>

> > One other thing to consider is that if he is surrounded

> > by kids acting older, he might start to copy them??? OTOH, maybe not. Just

> > an

> > idea. Go visit and see what you think fits! Oh, and if neither fit, see if

> >

> > the K/1 class would fit if he had an aide.

> >

>

> Hi Roxanna & Fania!

> Good to be back online.

> The K/1 class would be special ed non servere, but I'm not really sure what

> the heck that means...and would I want him copying an older group when he is

so

> immature. He is almost 5 but acts like he is almost 4.....

>

> I just got off the phone with the parent liason person who said this was the

> first year SD took the preschool and kintergarten age kids out of a program.

> Now they just have preschool kids, but no classes are high functioning enough.

> So they are suggesting the K/1 special ed. I'm very hesitant about all of

> this. They want me to sign him up at the local school to start things rolling

> and then they would find a school near us (kind of) that has a spec ed

> K/1.......my only concern would be that I'd really want him to do a general ed

K class

> next year. Sometimes I really want an advocate just to hold my hand and walk

> me through the process. I think next year when we move again (we only get

> the house for one year) it will be in the school district that has a lot of

ASD

> kids.....

> I know the program has to fit the kid and not the kid fit the program but how

> do you enforce that?

> Other than this IEP blah....things are definitely much better in this area.

> Even my marriage is better.....that is what a little space will do:)

> Johanna

>

October 8, 2003

,

Glad you enjoyed your stay in San Diego! We do like our weather here. It's

gotten to the point where we feel personally affronted when it rains or is

gloomy for too long!

Liz

weinert56 wrote:

> Hi Johanna,

>

> Another thought is a private preschool placement (mainstream or

> otherwise). If they don't have an appropriate placement for Joe, they

> have to find one. This could include a private preschool. Our local

> K and 1 put a lot of emphasis on writing and math. 1/4 of my

> daughter's K class repeated, mainly the ones born in Sept, Oct and

> Nov. If " young 5's " have a problem, I'd think twice about a child a

> preschool age.

>

> P.S. I was thinking of you and Liz. Our family went to San Diego from

> Thursday to Monday. (One of the benefits of homeschooling is

> vacationing when WE feel like it.) My daughter, Georgia, did pretty

> well - we had very temperate weather and there were really no lines

> for anything. She was a little cranky by the late afternoon, but I

> think a typical 6 year old kid would have been with all we were

> doing. She guffawed a bit loudly at the Wild Animal Park bird show,

> but otherwise did fine. She definitely made the connection between

> her Ape Eyewitness video and the animals at the WAP and zoo.

>

October 8, 2003

> Glad you enjoyed your stay in San Diego! We do like our weather

here. It's

> gotten to the point where we feel personally affronted when it

rains or is

> gloomy for too long!

When we are planning a trip to see my mom (in Carlsbad) she always

gives me the weather report. She'll say " it's really hot--it almost

80. " at which point I LOL because it's always 20 degrees hotter at

my house. I would really dig to live in a house that doesn't need

A/C again.

Jackie

October 8, 2003

In a message dated 10/8/2003 3:53:58 PM Pacific Daylight Time, lbohn@...

writes:

> Johanna,

> Welcome to San Diego! Where is this K/1 special ed program they're

> recommending? Not that

> I've heard of it... I'm pretty out of the loop when it comes to early

> childhood programs.

It's either Jerabek or Dingman (Dingman makes me laugh!) and I know one

person who has their child at Jerabek and he is the only one with autism in the

class....hmmm. She said the autism support person gave the teacher some

materials etc and she seems motivated.

> I would encourage you to observe, though. Things to look for... Does the

> teacher model

> good behavior? Does she treat the children with respect? Here's a website

> with some

> excellent questions to ask and things to look for. It's really geared toward

> preschoolers, but I think it applies to kindergarteners, too.

> http://www.washingtonfamilies.com/archive/choosepreschool.htm

> Welcome to San Diego! When you get more settled, we'll have to get together!

>

> Liz

> Thanks for the website and as soon as I can dig my way through the boxes and

> endless paper they used, I will call ya! I really wanted to go to the

> Atwood conference but its not on a weekend day!,,,,oh well.

> Thanks for the welcome people here are already so much friendlier than

> Marin!

> Johanna

October 8, 2003

In a message dated 10/8/2003 3:32:27 PM Pacific Daylight Time,

weinert@... writes:

> Another thought is a private preschool placement (mainstream or

> otherwise). If they don't have an appropriate placement for Joe, they

> have to find one. This could include a private preschool. Our local

> K and 1 put a lot of emphasis on writing and math. 1/4 of my

> daughter's K class repeated, mainly the ones born in Sept, Oct and

> Nov. If " young 5's " have a problem, I'd think twice about a child a

> preschool age.

>

Yeah, this is the part that bothers me....the K class not so much especially

if its all kids that need a lot of extra, but including also the 1st

grade.....I'll definitely have to see about it. The other thing is if he is

just too

young for that class after 30 days we have a IEP (oh, goodie) and then I can

request a private preschool.