(No subject)

[Guest guest]

Hi

i understand your point exactly

Robbin

[Guest guest]

Ywellen,

I think all she has to do is reply to one of the e-mails

[Guest guest]

Thanks for all the help and I will call her with the info I received.Ywellen

[Guest guest]

If that fails, try going to onelist.com and registering for the JRA List.

Happy New Year Everyone, but especially Georgina who created this group!

Hope all are well(ish).

Oliver

Re: (no subject)

> Thanks for all the help and I will call her with the info I

received.Ywellen

>

>

> For links to websites with JRA info please visit:

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

>

> To manage your subscription settings, visit:

> subscribe/

>

>

[Guest guest]

Hi Oliver,

Long time no see ... er, write! Where have you been? It's been about

a year already (hasn't it?) since onelist became egroups. So actually,

the correct URL to visit is:

Thank you for the New Year wishes. Same to you and to the family. How is

Damien doing these days?

Take care,

Georgina

Oliver Skudder wrote:

>

> If that fails, try going to onelist.com and registering for the JRA List.

>

> Happy New Year Everyone, but especially Georgina who created this group!

>

> Hope all are well(ish).

>

> Oliver

[Guest guest]

Amy,

Alyssa battles the weight issue as well. Combine that with anemia and we

struggle. One thing I have found and our Rheumy requested. Carnation

instant breakfast. You can freeze to make like ice-cream or just mix up. I

also make smoothies and put protein powder in it. Its tasteless and mixes

right in. If he likes yogurt, get the full fat kind and mix with fruit in

blender. You can play with consistency to make dips for fruit or thick

smoothies. It can also be frozen. Peanut butter on graham crackers is good

too. Cereal is a great snack. Granola ( I toss some m & m's in!).

Hope it helps,

Amy & Alyssa

(no subject)

> Dakota went to the rhumey last Monday. Not good news. The jra has now gone

to

> another joint, the medication is eating his stomach, and now he has to

take

> additional medications.

> The thing that worries me the most is that he is loosing weight, he is

> already so skinny. Can any one give me any advice or suggestions. I would

> really appreciate it.

> Please keep him your prayers.

> Amy

>

>

>

[Guest guest]

Hi Amy

What great ideas the other Amy gave you. Jordan too (4 yr systemic)

lost his appetite since the onset of this horrible disease, even

Mc's didn't appease him, and you know a kid is sick when they

turn McD's down!! He's only 40 lbs and 45 " tall, and he looks so

scrawny to me. You didn't mention what med was affecting his

stomach, I know Indomethacin is hard on the stomach, and Jordan takes

Zantac along with it, but it HAS to be taken on a full stomach. The

Carnation milk is a great idea, my oldest son (now 18) had it for

breakfast for years as he wasn't a breakfast eater. They're good any

time of the day. I made the mistake of letting Jordan have his

waffles or cereal anytime of the day if that meant he would eat it,

then had such a hard time getting him to eat anything else. Dad put

a stop to that and he's starting to eat a little better now, but not

as good as we'd like yet. Good luck with the ideas that Amy gave you,

I think they're great ones!!

Lori, mom of Jordan 4 yr systemic

> Dakota went to the rhumey last Monday. Not good news. The jra has

now gone to

> another joint, the medication is eating his stomach, and now he has

to take

> additional medications.

> The thing that worries me the most is that he is loosing weight, he

is

> already so skinny. Can any one give me any advice or suggestions. I

would

> really appreciate it.

> Please keep him your prayers.

> Amy

>

>

>

[Guest guest]

Amy,

Try feeding him what he likes. When my patients will not eat I give them some

dessert first then alternate with high protein foods. Also a constant supply

of food, like thing to nibble on. Peanut Butter crackers, Cheese, whole milk

etc. Avoid caffeine and carbonated drinks, they upset your stomach. You may

be already doing this. These are just basic measures

Maybe then can give him mallox to coat his stomach. Also maybe they can

change his medication. Good Luck I hope he feels better SHU

[Guest guest]

Amy and Lori:

When Mickey's appetite is bad, we get her to drink some Ensure. It's like a

meal replacement and comes in about 6 different flavours. Maybe more! There

are kids versions of it, too, but the docs told me that considering

everything, even the adult version is a good idea. Mickey particularly likes

the Wildberry flavour. When we can't get her to eat, its a relief to at

least get the vitamins etc into her that way. She's nearly always willing to

sip at one of those in a drinking box. The colder the better, especially

when she has her fevers.

Lynn

[Guest guest]

what type of jra does he have?

>From: Amybear41@...

>Reply-

>

>Subject: (no subject)

>Date: Mon, 2 Apr 2001 23:36:13 EDT

>

>Dakota went to the rhumey last Monday. Not good news. The jra has now gone

>to

>another joint, the medication is eating his stomach, and now he has to take

>additional medications.

>The thing that worries me the most is that he is loosing weight, he is

>already so skinny. Can any one give me any advice or suggestions. I would

>really appreciate it.

>Please keep him your prayers.

>Amy

>

>

>

[Guest guest]

Amy...

Ask about Carafate.....it is for the stomach, actually heals gastritis. It

is not nearly as nasty tasting as the Zantac and works much better. My son

had bleeding ulcers from the medications, and had a hemaglobin of 6!!!

Within a week of taking the Carafate religiously, his number went up to 7!!

It is worth a shot. Hope things get better for him, and you. Also, I don't

know what type of anti-inflammatory he is on, but Vioxx is definately the

best for tummies!! Jonnathon has been taking it for about 19 months, and

his tummy has been good most of the time....much better than when he was

taking Naprosyn. Good luck to you.

Donna

(no subject)

> Dakota went to the rhumey last Monday. Not good news. The jra has now gone

to

> another joint, the medication is eating his stomach, and now he has to

take

> additional medications.

> The thing that worries me the most is that he is loosing weight, he is

> already so skinny. Can any one give me any advice or suggestions. I would

> really appreciate it.

> Please keep him your prayers.

> Amy

>

>

>

[Guest guest]

Hi Amy,

Unfortunately like the others my son r (3yrs systemic) also has not been

gaining. He weighs 27lbs 36 " . In the beginning we tried ensure but no

matter what we did he just did not like it. We ended up fighting all day and

he did not benefit either one of us. Our nutritionist suggested doubling

our milk. We take dry milk and add it to whole milk. 3 cups of whole milk

and 1 1/2 cups of dry. He gets twice the calories. We also add the dry

milk to anything we can think of, oatmeal, eggs, beef, macaroni anything

just about. It dissolves into the food and he does not mind at all. Good

luck

Pamela

>From: babylamb@...

>Reply-

>

>Subject: Re: (no subject)

>Date: Tue, 03 Apr 2001 12:10:11 -0000

>

>Hi Amy

>

>What great ideas the other Amy gave you. Jordan too (4 yr systemic)

>lost his appetite since the onset of this horrible disease, even

>Mc's didn't appease him, and you know a kid is sick when they

>turn McD's down!! He's only 40 lbs and 45 " tall, and he looks so

>scrawny to me. You didn't mention what med was affecting his

>stomach, I know Indomethacin is hard on the stomach, and Jordan takes

>Zantac along with it, but it HAS to be taken on a full stomach. The

>Carnation milk is a great idea, my oldest son (now 18) had it for

>breakfast for years as he wasn't a breakfast eater. They're good any

>time of the day. I made the mistake of letting Jordan have his

>waffles or cereal anytime of the day if that meant he would eat it,

>then had such a hard time getting him to eat anything else. Dad put

>a stop to that and he's starting to eat a little better now, but not

>as good as we'd like yet. Good luck with the ideas that Amy gave you,

>I think they're great ones!!

>

>Lori, mom of Jordan 4 yr systemic

>

>

>

>

>

>

>

>

>

>

>

>

> > Dakota went to the rhumey last Monday. Not good news. The jra has

>now gone to

> > another joint, the medication is eating his stomach, and now he has

>to take

> > additional medications.

> > The thing that worries me the most is that he is loosing weight, he

>is

> > already so skinny. Can any one give me any advice or suggestions. I

>would

> > really appreciate it.

> > Please keep him your prayers.

> > Amy

> >

> >

> >

[Guest guest]

Hi

My son Jordan has been on mtx since Feb/01. He hasn't had any side

effects at all from it. What you're describing (at least what it

sounds like to me) is a flare up, just like Jordan's was until he

was diagnosed. He was sore from head to toe, when the fever would

subside, he was ok, when it spiked, look out!! He was diagnosed

systemic, I don't think you mentioned what type of JRA your nephew

has, but fever and rash go hand in hand with systemic or stills.

Somehow I doubt it was the mtx (but one never knows), keep at the

doctor and get an answer!!

Lori

> hi, my name is , I am the aunt of a 9yr old boy with JRA. I

have

> emailed the forum before.....

> I am writing today to get information from family members of

children with

> JRA who have been on Methotrexate.....My nephew was just put on this

> medication this week. He had his first dose yesterday morning. Last

night my

> sister had to take him to the hospital because his fever spiked to

104+, he

> said his chest hurt and couldn't breath right, and his whole body

ached to

> the point where he wouldn't let anyone touch him because he hurt so

much, he

> complained about his back the most which hasn't happened before.

> Does anyone have any information about the side affects of this

medication

> or has anyone experienced this before. Are there any major concerns

we

> should have? Anything will be helpful......Thank you for all your

help

>

> A very concerned aunt,

>

>

>

> L. s

> SQA Project Coordinator

> jstevens@s... <mailto:jstevens@s...>

>

>

> Softricity, Inc.

> 332 Congress Street

> Boston, MA 02210

> ph 617.695.0336 x137

> fx 617.338.7769

> www.softricity.com <http://www.softricity.com/> - Powering Software

as a

> Service

[Guest guest]

Been advise to drink distilled water do you drink that also?Eating the right

things,just new to this ,thanks for the response.

[Guest guest]

Ok I will....I'll get back to the group with a day and time to chat!

I just think a scheduled time could be easier than always trying to check if someone is online...?!

I am glad I don't have to fight for the computer!

It's all mine whenever I want it!

Of course for now....

Hopefully by the time my kids want to be on all the time...

we will have another one!

TTYL....

**HAPPY**HOLIDAYS**

**AND WARM HUGS**

Bert.

[Guest guest]

I went into the chat room a couple of times, but found no one there. Let me know when you go on and I'll try and be there. My kids usually tie up the computer but if I have a time I may just tell them to get off. Ann [ ] (no subject) Hi does anyone ever chat?I thought on certain days and times maybe some of us could chat?If anyone is interested let me know.....Smiles to all!!!Bert. **HAPPY***HOLIDAYS** **AND WARM HUGS**

[Guest guest]

Sorry I missed you. By the time I figured out how to get there you were gone. Maybe tomorrow. ann [ ] (no subject) Hi...its....Bert.....I am on chat all ALONE!!!I have a little time to chat right now if anyone wants to? **HAPPY**HOLIDAYS** **AND WARM HUGS** Bert.

[Guest guest]

Thanks Bert (or big bertha) lol.. I like that, I used to be called Fatty Patty by the boy next door growing up. I was also little so it never bothered me until my nephew called me aunt fatty patty (he was 4 but I was on prednisone and no longer little) boy did that bother me. There is no use feeling bad, nor can you explain to a 4 year old why I was so fat (assuming he cared).

Anyway I am now probably normal for a 48 year old whatever that means, A little wider around the middle but I blame it on 2 surgeries that cut all my stomach muscles. After transplant surgery and after 30 women don't belong with their bellies showing (although in Miami almost anything goes!). I'm afraid the battle field scars on my belly would scare someone to death anyway!

Anyway, The weather down here is warm & sunny. Today was funny, I went over to help a friend trim her tree. I put on a Xmas vest for the season and we were laughing about the snowmen on my vest melting onto my shorts. Xmas in the tropics is an adventure. My family is congregating in MA this year at my mother's house (where we all grew up) My husband & I are headed up around the 20th then joining two old college roomies and their families for skiing on Killington for New Years.

I don't know why I am rambling...I feel guilty embarking on these adventures as so many of you are sick and hurting right now. I send you lots of positive thoughts and look forward to having you come out of AIH and resume normality. Right now I have to keep away from my husband he has somnething and is running a fever so I think I will hit the guest room tonight and not take any chances. I may feel better generally but none of us can ever forget we are immunosuppresses.

Good night all.

Patty (the miami one)

-----Original Message-----From: sunshinedotson@... [mailto:sunshinedotson@...]Sent: Saturday, December 01, 2001 11:33 PMliver problems Subject: [ ] (no subject)Hi Patty in Fla....I can't keep all you patty's and joans/joanna's in order!!LOLOLO!!!how are you doing? I bet you are having beautiful weather....here in MI. ccoollllldddddd and damp!!!! YUCK! will be snowing soon too!DOUBLE YUCK! :)my kids are passing around strep-throat here....first my 14 yr. old,now my 18 month old....no break in between either!14 yr old still on his antibiotic.....my poor babies.... :)I am trying to stay away from them as much as I can, but of course it's IMPOSSIBLE!Hope you are doing well....have you been Christmas shopping yet??I've bought a few things here and there....NOT EVEN CLOSE TO BEING DONE THOUGH....LOL!!!!I absolutely LOVE Christmas!! just don't like the snow anymore...LOL!If it snowed only on Christmas Eve and Day....I would be a happy camper! LOL!Take care.... **HAPPY**HOLIDAYS** **AND WARM HUGS** Bert.

[Guest guest]

In a message dated 12/2/01 8:32:00 PM Pacific Standard Time, scott_p@... writes:

I don't know why I am rambling...I feel guilty embarking on these adventures as so many of you are sick and hurting right now.

Patty.....you're sweet to worry....but you should never feel guilty for feeling great! Share your joy with us....it will give us a lot to look forward to when some (hopefully all!!) of us get there!!!

Skiing huh???.....always been afraid of it......

you're braver than I thought!

gone from the 20th until the New Year?.....

BOY WILL YOU HAVE A LOT OF MAIL WHEN YOU GET BACK...LOLOLO!

I will miss you..........don't forget to say bye....

Hope your husband gets to feeling better...

TTYL....

**HAPPY**HOLIDAYS**

**AND WARM HUGS**

Bert.

[Guest guest]

Good luck .

[Guest guest]

Good luck !! We'll be thinking of you

Bethanne

mtmuscldog@... wrote: Well, Wish me luck one and all. Tomorrow morning I find out if I officially become an acting member of this group. My liver biopsy results will be revealed. I hope its not AIH, but after such a week-and-a-half of such wonderful encouragement and support , I know that there is a group of people that can help me through this. Thank you for listening to me whine and my ridiculous questions. I have learned a lot during this time. You really have helped me immensely through a difficult process.Thanks again,

[Guest guest]

In a message dated 1/9/02 10:22:29 AM Pacific Standard Time, mtmuscldog@... writes:

Greeting everyone! Today I become a full fledge member of the group - no longer a rushee. I got my diagnosis today. No cirrhois. Infaltration of portal tracts with early fibrosis. I started today on 40mg of prednisone for 2 weeks - cut to 30mg for 2 weeks and then 20mg - return in a month for blood work. All in all I wasnt too upset with the news and I thank you guys for that. Knowing a little about the disease not only eased my mind but surprised my doctor as well. Thanks again

(AIH 2/02)

Sounds great! Now you know what's wrong and what you need to do about it. That has to be a step in the right direction. And, you're in relatively good shape -- it's not very far advanced, and your dosage is fairly low!

Harper

[Guest guest]

We will be thinking about you and good luck. Ann CT [ ] (no subject) Well, Wish me luck one and all. Tomorrow morning I find out if I officiallybecome an acting member of this group. My liver biopsy results will berevealed. I hope its not AIH, but after such a week-and-a-half of suchwonderful encouragement and support , I know that there is a group of peoplethat can help me through this. Thank you for listening to me whine and myridiculous questions. I have learned a lot during this time. You reallyhave helped me immensely through a difficult process.Thanks again,

[Guest guest]

Bethanne,

I agree. My LFT's have been up and down. I would not consider dropping dose

unless I knew what my LFT's were. Just my opinion also.

.

[Guest guest]

Thanks pal