Good News!

[Guest guest]

Amy,

This is good news, however I have a question.How are you doing? From my experience waiting for a transplant made me feel almost like my life was out of control. Being at the mercy of my numbers, waiting to see what was going to happen from visit to visit. And with encepalopathy, acities, and varacies you must be fairly miserable.

I am projecting somewhat because as you know I am also on the transplant fence (or re-transplant in my case). I found out today my levels are up (AST and ALT in the 300's and alkp & GGTP over 1000) but my bilirubin is down to 4.6. There is no medication they can treat me with because it is chronic rejection.... Thus I ask. How are you dealing with this emotionally?

Patty

-----Original Message-----From: holzboog@... [mailto:holzboog@...] Sent: Wednesday, March 12, 2003 5:55 PM Subject: [ ] Good news!Hi Everyone, Well I had my appt. at the tx clinic yesterday and all my numbers looked good. In fact I am at the low end of the MELD score now. They said that things jump around a bit but it does show that I'm hanging in there! Hard to complain about that news! The other symptoms that put me there are being controlled pretty well with the meds - ascites, encephlopathy and varicies. Even my platelettes were up to 52K where they had been at 39 for quite awhile. Well I'm off to get my prescriptions and then rest... Hope you all have a happy moment and a bit of good news in your day!Love,Amy

[Guest guest]

Amy,

Now I feel really guilty... I didn't say but I am very happy for you.

Patty

[ ] Re: Good news!

Amy!

How great! I am so excited for you. Is it possible for things to

become well enough they take you back off of that tx list?

Congratulations. I am really happy for you, and hope you are feeling

well. Nice to know you will feel good when we all get to meet you.

Love,

Carole K

[Guest guest]

Patty and Amy I can relate to you both and I know what you are saying

Patty. I am glad I never had signs of rejection. I hope a liver becomes

available soon. Amy

with all your complications it just seems like they may be only makng

you wait longer.

I hate to say this but you know as your liver gets worse your ASTS, ALTs

etc become normal....your albumin and PTTs are more important now as is

your physical condition . I hope your better numbers are a sign of the

liver regenerating. Hang in, I'm praying for both of you.

love jerry

[Guest guest]

Thanks Jerry.

Patty

RE: [ ] Good news!

Patty and Amy I can relate to you both and I know what you are saying Patty.

I am glad I never had signs of rejection. I hope a liver becomes available

soon. Amy with all your complications it just seems like they may be only

makng you wait longer. I hate to say this but you know as your liver gets

worse your ASTS, ALTs etc become normal....your albumin and PTTs are more

important now as is your physical condition . I hope your better numbers are

a sign of the liver regenerating. Hang in, I'm praying for both of you.

love jerry

[Guest guest]

Thanks everyone for your support in good times and bad.

Jerry: I appreciate the info, I had forgotten about the counts being normal but mine have been pretty much so since I was first diagnosed with cirrohsis. Of course, my bilirubin isn't bad, my creatinine was just slightly up and the INR actually "improved" a bit. I know I'll be much worse when I get a liver because I have the O+ blood and they don't count time on the list. Thanks for the info. It's easy to lose those details - I'm glad you are a good detail oriented person - I definitely am not!

Amy

[Guest guest]

fania,

sounds like he is doing well in spite of this war which must be stressful on

everyone. It seems so far away sometimes and my kids don't really know what

is going on....well, except for my daughter though she is doing okay. I hope

its over soon!

Thanks for sharing some good news!!!!

BTW, do your best to take some time for " you " during all of this if at all

possible.

Holding you guys up in prayer.

Johanna

In a message dated 3/25/2003 1:22:55 PM Pacific Standard Time,

beitchazen@... writes:

> good news! we had our periodic meeting at m's school: the principal started

> by saying; " we are very pleased with M "

> wow!

> they said that of course they realize there still may be regressions and

> difficulties, and there is still a long way to go until he is integrated as

> " normal " (I chuckled secretly at this one exchanging smiles with the AS

> expert) but - they feel he has made great strides, and so has the staff.

> they no longer feel like they are afraid of his outbursts, which in turn

> are very few, very short, and they are very impressed with how he knows now

> to calm himself. he has also started to close the gap on the studying

> material in quite a speed. hooray ! they feel that the current plan is

> working well and they asked my permission to call for an IEP to make this

> plan official (it is indeed needed in order for them to allocate the

> necessary money). overall I was pleased. the IEP request means that I will

> have to trust them that they really mean only to officially claim the

> allocation of money needed for his personalized plan, but I figure I have

> to trust *someone* in the system and at this point they have indeed proven

> themselves as putting his needs first......

> F

[Guest guest]

<<<<> BTW, do your best to take some time for " you " during all of this if at

all > possible. Holding you guys up in prayer. <<<<

thanks, Johanna.

but.. are you kidding? waht time? in addition to it all I am dealing with a

very nasty person I work with , to the point of telling the ceo taht until I

have a meeting with him my work is on hold as far as I am concerned and I

may even quit. the meeting is sometime next week, don't have the energy to

go into details here.

F

>

> In a message dated 3/25/2003 1:22:55 PM Pacific Standard Time,

> beitchazen@... writes:

>

> > good news! we had our periodic meeting at m's school: the principal

started

> > by saying; " we are very pleased with M "

> > wow!

> > they said that of course they realize there still may be regressions and

> > difficulties, and there is still a long way to go until he is integrated

as

> > " normal " (I chuckled secretly at this one exchanging smiles with the AS

> > expert) but - they feel he has made great strides, and so has the staff.

> > they no longer feel like they are afraid of his outbursts, which in turn

> > are very few, very short, and they are very impressed with how he knows

now

> > to calm himself. he has also started to close the gap on the studying

> > material in quite a speed. hooray ! they feel that the current plan is

> > working well and they asked my permission to call for an IEP to make

this

> > plan official (it is indeed needed in order for them to allocate the

> > necessary money). overall I was pleased. the IEP request means that I

will

> > have to trust them that they really mean only to officially claim the

> > allocation of money needed for his personalized plan, but I figure I

have

> > to trust *someone* in the system and at this point they have indeed

proven

> > themselves as putting his needs first......

> > F

>

>

>

>

[Guest guest]

In a message dated 3/25/2003 10:48:03 PM Pacific Standard Time,

beitchazen@... writes:

> <<<<>BTW, do your best to take some time for " you " during all of this if at

> all >possible. Holding you guys up in prayer. <<<<

>

> thanks, Johanna.

> but.. are you kidding? what time? in addition to it all I am dealing with a

> very nasty person I work with , to the point of telling the ceo that until

> I

> have a meeting with him my work is on hold as far as I am concerned and I

> may even quit. the meeting is sometime next week, don't have the energy to

> go into details here.

>

> F

>

I hear ya! Wish it was different for you right now, but I know how difficult

finding even 10 mins can be.....

[Guest guest]

Hi Val,

I am so relieved to hear that the results came back alright, so I can

just imagine how happy you were to hear that report from the doctor!

We've been through the same sort of scenario a few times in the past.

Last time, I didn't let myself get quite so worried. Just figured the

fasting glucose would come back okay, based on our past experience. Then

I thought ... oh no! What if, now that I'm feeling more complacent about

it, the results do actually point to diabetes?!? So then I worried some

more. Fortunately, our fears weren't realized. I am so grateful, not

only about 's glucose levels but also, despite him being on

steroids for so long, that we have never had to deal with avascular

necrosis. I know of some kids with JRA who have had that, and not even

taken oral steroids, but it's yet another risk for those who do need to.

I also can totally relate to your feelings and concerns about Robbie's

height. When they're really sick, in a crisis, their height is often the

furthest thing from our mind but once they're starting to do better, it

is an important issue as it can affect one's day to day life in big ways.

People sometimes expect less from a child who looks younger or tend to

want to protect them, baby them. It's really important, no matter how

young or small they look, that they engage in age appropriate activities

and that they know our expectations are based on their ability. Some

people with small for their age kids will actually keep them back a

grade in school, so they aren't surrounded by 'towering giants'. I'm not

sure that I agree with that practice. In our experience, Josh has been

able to 'hold his own' among his peers. We'll be in for some new

'adventures', I'm sure, once the summer is over and he begins high

school but I feel pretty confident that he'll be able to make the

adjustment. Only time will tell. But I'm glad you held your ground and

insisted that he be placed with kids his own age.

Josh noticed that in PE class this year, the large kids didn't often

pass to the smaller kids. They wanted to hog the ball all the time. He

still gave it his best effort, though. One thing that bothered me (more

than it bothered him) was that as he surprisingly got ahold of the ball

and was ready to make a touchdown in flag football ... one of the very

big kids from the opposing team ran over and literally lifted him off of

the playing field and placed him into the out of bounds section so he

couldn't make the score. In my way of thinking, that was unfair. It

could have been his 'moment of glory' and something he might have

remembered, with happiness, for a long time. Instead, it was a bit of a

disappointment. But ... ya' win some, ya' lose some. It was more

important for the other guy that he not make the touchdown than it was

for Josh to make it. He feels proud just being able to get out there and

play and actually run with (sometimes even outrun!) the other kids.

Okay. I better go. I'm rambling away, too!

You and Robbie are in our thoughts,

Georgina

PS ... Josh decreased to an all time low of just 2mgs of prednisone a

day, starting on Saturday!!! He's been feeling a little bit more sore, a

little bit more tired, a little bit more stiff in the mornings ... but

no major dysfunction. At least not yet. I still can't really believe

this. It'll take some time getting used to and hopefully, nothing crazy

will happen in the interim. Maybe I'm dreaming? :-)

carneyval@... wrote:

>Robbie's fasting labs were ok - no diabetes!!!! Hooray! There was one test

that they did that tests the amount of serum glucose over time (I think he said

2 weeks) - though how they did it in one day I don't know - I guess it must be

measured in the breakdown or metabolism some way - any way that one was .1

elevated above the norm. (5.8) The rheumy said that he doesn't consider

anything under 6.0 elevated, even though the lab flagged it as elevated -

doesn't mean much since the other (serum and urine glucose) were normal. It

bears continued watching, and we will have make sure all of his labs are fasting

from now on - but for now all is clear.

>

>Just one more reason to get Robbie to at least a low dose of the steriods

(currently 14mg) - and to try something else if he flares when the dose gets

low. That and his lack of growth. He started his new " summer camp/daycare "

yesterday, and I told them he was five and finished kindergarten so they could

put him in the right group - and they still tried to put him in with the four

year olds. I had to repeat three times that he would be six in the fall and

that he finished kindergarten! When we finally walked him into the correct

class, the other kids towered over him. I bought him size four shorts for

summer, and they slide off him, and are way too long. Back to 4T and the

occasional 5T - though those are pretty big for him. He can still wear some of

his 3T shorts.

>He is getting " fashion conscious " now and wants to wear big boy clothes. He is

excited because his daycamp will be having martial arts classes twice a week and

music classes. The program is subsidized through work or I would have never

been able to afford it. The daycare at work was full, so they contracted with

outside centers to provide care at the price we would pay at work (which is

substantially lower).

>

>I have been noticing the comments about the birthweight and connection to JRA.

Robbie was a 28 week premie & weighed 2 lbs 7 oz at birth. He was tube fed

breast milk for the first two months.

>

>Gotta get back to work - just wanted to let you guys know and now I'm rambling

on. Thanks again for being there!

>Val

>Rob's Mom (5,systemic)

>

>I want to thank everyone for all of the well wishes, good thoughts and prayers.

I'm still swamped at work, and my wrists are still a mess - but I will post more

soon - I hope. I have been reading some of the posts when I get the chance -

and everyone is in my thoughts and prayers all of the time.

>

[Guest guest]

Georgina-

I'll be keeping my fingers crossed that the drop in meds won't adversely affect Josh. Keep us posted.

Diane (, 4, pauci)

[Guest guest]

Hi,

Thanks, Diane. Everything appears to be going well ... so far. I'm very

excited. We've been trying to get to this point for a very long time and

now it looks like it finally may become a reality.

Take Care,

Georgina

dbornscheu@...

wrote:

Georgina-

I'll be keeping my fingers crossed that the drop in meds won't adversely affect Josh. Keep us posted.

Diane (, 4, pauci)

[Guest guest]

Tina, congrats! Are you using enzymes and how long have they been

eating the foods again? I'm wondering because I've reintroduced g/c

to Allie in the last 2 months with no change. I've only done 6

rounds of chelation, so I can't give that all the credit (I guess,

could it be the factor?) but I keep waiting for her to start having

diarrhea again. I've read sometimes it can take months.

Debi

[Guest guest]

--- In , " Debi " <fightingautism@y...>

wrote:

> Debi,

We are not using any enzymes at all. It has been almost two weeks

now with no negative reactions. There are still certain

restrictions, like soy and corn, but milk , wheat and certain

additives like nitrates and food dyes seem to be ok. If you are

concerned about a possible reaction, maybe use Houston enzymes and

try one food at a time.

Good luck,

Tina

[Guest guest]

Thanks, already using, but not every single time. Just curious about

your experience.

Debi

> > Debi,

>

> We are not using any enzymes at all. It has been almost two weeks

> now with no negative reactions. There are still certain

> restrictions, like soy and corn, but milk , wheat and certain

> additives like nitrates and food dyes seem to be ok. If you are

> concerned about a possible reaction, maybe use Houston enzymes and

> try one food at a time.

>

> Good luck,

>

> Tina

[Guest guest]

Hi Barb,

Yipee! It looks like Enbrel has won again.It obviously doesn't work for everyone but when it does, it truely is a miricle drug.

My little guy is in the same boat.Thanks to Enbrel he has come off the steroids,Plaquenil,Ibuprofin and has gone from 25mg MTX down to 7.5mg.Still tapering with hopes of clinical remission.Not a hint of arthritis in 15 months.

Hugs

Becki and 5 systemic

[Guest guest]

That is good news! Good luck to you and e. I hope she is able to get off the Enbrel. That would be great! Michele (16, pauci & spondy)

-----Original Message-----From: Todd & Barb Lange [mailto:lange2@...] Sent: Wednesday, February 04, 2004 6:21 PM Subject: Good news!

Hello all!

I don't post often, but I read EVERYTHING! I learn so much from this sight. .. .it really is amazing. I have to share the good news we got today at e's appointment. e is 3 yrs old and has poly JRA. At 18 mos. old, we tried mtx, celebrex, naprosyn, etc. . . . .Finally we began Enbrel injections in June of 2003. In 7 mos. time, her sed rate has gone from a 40-45 down to a 4-6 range, consistently. Her wrists and knees (joints mostly affected) have full range of motion! The Dr. said that he will keep her on the Enbrel injections until June, and then taper her off to see if we can get her into full remission! Yippee!

Thanks for all the info. and support! It makes this whole yucky disease much more tolerable.

Barb and e (3 yrs. poly)

[Guest guest]

Awesome! Yeah e!

xoxo, Ellie and Riley 6 poly

" Tepper, Michele " <MTepper@...> wrote:

>That is good news! Good luck to you and e. I hope she is able to get

>off the Enbrel. That would be great! Michele (16, pauci & spondy)

>

>     Good news!

>

>

>    Hello all!

>

>    I don't post often, but I read EVERYTHING!  I learn so much from

>this sight. ..  .it really is amazing.  I have to share the good news we

>got today at e's appointment.  e is 3 yrs old and has poly JRA.

>At 18 mos. old, we tried mtx, celebrex, naprosyn, etc. . . . .Finally we

>began Enbrel injections in June of 2003.  In 7 mos. time, her sed rate

>has gone from a 40-45 down to a 4-6 range, consistently.  Her wrists and

>knees (joints mostly affected) have full range of motion! The Dr. said

>that he will keep her on the Enbrel injections until June, and then

>taper her off to see if we can get her into full remission!  Yippee!

>

>    Thanks for all the info. and support!  It makes this whole yucky

>disease much more tolerable.

>

>    Barb and e (3 yrs. poly)

>

>

>  _____

>

>    

[Guest guest]

Barb,

This is GREAT news... I hope everything continues to go smoothly and e will be drug free by JUne!! OOO

HUgs Helen, mom to (6,systemic) Optimize your Internet experience to the max with the new MSN Premium Internet Software.

[Guest guest]

Sorry - I am waay behind on posts, but I just wanted to let you know

that your news is great news! I know it gives me hope for Caroline!

> Hello all!

>

> I don't post often, but I read EVERYTHING! I learn so much from

this sight. .. .it really is amazing. I have to share the good news

we got today at e's appointment. e is 3 yrs old and has poly

JRA. At 18 mos. old, we tried mtx, celebrex, naprosyn,

etc. . . . .Finally we began Enbrel injections in June of 2003. In 7

mos. time, her sed rate has gone from a 40-45 down to a 4-6 range,

consistently. Her wrists and knees (joints mostly affected) have

full range of motion! The Dr. said that he will keep her on the

Enbrel injections until June, and then taper her off to see if we can

get her into full remission! Yippee!

>

> Thanks for all the info. and support! It makes this whole yucky

disease much more tolerable.

>

> Barb and e (3 yrs. poly)

[Guest guest]

Tammy:

I am always amazed at how small the world can actually be. She was meant to

be in that doorway just as your oldest was meant to be speaking about JRA at

that exact moment. It will be nice for both you and Gabby to have 'in-person'

people who understands what JRA is and all it involves.

Take care.

Patty

[Guest guest]

Hi Tammy,

That is great news.The same thing happened to me only under differant circumstances. is 5systemic and we met a mother who's daughter is 9 months younger and systemic.They go to the same school and the little girls mom cuts s hair.It has been a true blessing to have met them.I have also had the privlage of meeting Garret 10yrs old with systemic.His dad is our counties chairman for our Arthritis walk.

It is so helpful to have others to talk too.

Hugs

Becki and 5 systemic

[Guest guest]

Hi Stacia,

was the same way.Definately systemic and at first visit the arthritis was in several fingers,both elbows,knees,ankles and wrists.We just call his systemic but he may have outgrown the systemic part and just have poly.Hard to tell because he has been in a drug induced remission for 14 months and no systemic symptoms for 2yrs this April.

Technicaly they break down JRA into several sub-types.

Pauci with positive ANA

Pauci with negative ANA

Poly with positive RA Factor

Poly with negative RA factor

Systemic

Each subtype is classafied by disease coarse in the first 6 months.Very complicated.Some kids have Pauci extended.Four or fewer joints the first 6 months only to have more joints involved after the first 6 months.

With systemic disease the fevers and rash can proceed the arthritis by months and even a year.

I hope I didn't confuse you more.

Hugs

Becki and 5 systemic

[Guest guest]

Tammy..its bittersweet yes but a small world we live in. I think it is great to have someone so close you can chat with and provide support to as well as receive it from. There is a FACES member I had the pleasure of meeting in (of all places) the rheumys office 3 years ago. We had never met before but we knew of each other. Let me explain....we are about the same age, have the same name, both have JRA , similar disease in that our visibilities are similar, and we grew up in the same area but never met. I would be out and someone would start talking to me, call me by name but I would have no clue who I was talking too and the same would happen to her. Pretty eerie, I was beginning to doubt my sanity and wonder if I was living a double life but I knew better. When we were introduced both of our jaws dropped! We had met the other "donna"!!! We are now the best of friends and support each other through it all. I hate to meet others with this because it means others are suffering but at the same time I have made some of the best friends a person could want....I hope you guys can enjoy the same friendship we have.

As for that contest I will need the drawings by Feb. 27th. We will be choosing a winner the following week. We have very few now and really need some entries so hope to hear from all really soon!

Hugs and smiles! Donna

[Guest guest]

Tammy,

That IS great news, I'm sure you will be of great assistance to this new family. IM so proud of the way Annie stood up and so elequently told the other kids of her sister. She sounds like a wonderful and protective big sister.

hugs Helen, mom to (6,systemic) Click here for a FREE online computer virus scan from McAfee.

[Guest guest]

In a message dated 3/23/04 10:50:12 AM Central Standard Time, likalee30@... writes:

Party time~ I got my referral to the endo today! I go in April 5th. Hooray!

Yay !!! hope you get some answers!!!!

Pam