Holly

[Guest guest]

We will keep Holly in our prayers.... have they suggested a hematologist

seeing her? They deal with blood disorders..My daughter had a problem for

awhile with her platelets & if not kept right on top of can become a very

serious issue. I pray they get Holly straightened out! Keep us updated ...Kris

[Guest guest]

AJ

you and holly are in ours prayers

go with your heart

Robbin

[Guest guest]

AJ,

I'm so sorry to hear about Holly's most recent problem. Things had been

going so well for a while. You're right on top of things though, so I'm

hoping you'll be able to get some answers soon. I would definitely go

with your instinct and call her rheumatologist. Get their opinion on

this quickly. I hope, like you do, that if this is possibly a flare

brewing that it can be averted soon. Stopping Lodine, and going back to

something that wasn't working, doesn't seem like the best option. Thanks

for the update. You and Holly will be in our thoughts.

Aloha,

Georgina

ajaomom@... wrote:

>

> Hi everyone,

> I have been posting lately, just not about Holly. Thought I would catch

> everyone up on what is going on. Talked with her rheumie last week, told he

> she is still having significant foot pain, to the point of not being able to

> walk by evening. He said instead of upping the pred, he would like to switch

> her to lodine, instead of motrin. Lodine is another type of anti

> inflammatory. So I started that on Saturday, as I don't like to start new

> meds during the week when I can't watch her. So everything seemed fine, the

> arthritis part of it seemed better controlled. Well, last night (Monday

> night) I noticed a " different " rash on her and thought in looked like petichi

> ( that is a rash you would get if your platelets are low). Well, I talked

> with her gastroenterologist today as she had an appt with him already, and he

> was extremely concerned about it, and sent us immediately for labs. Well, her

> platelets are fine, but he believes her body has lost the ability to make

> more platelets so took her off Lodine for atleast 48 hours, he said put her

> back on motrin and see what happens with the rash. My thinking is to call the

> rheumie tomorrow as I am afraid the arthritis is going to go into an even

> worse flare because the motrin wasn't working to begin with as that was why

> we changed :-( What a mess, I will keep you all posted tomorrow, please

> keep holly in your prayers. Aj

[Guest guest]

Kris,

We have seen a hematologist a few times early on in the disease for her,

it was a few years ago actually. We have not gotten that far with this issue

yet. I did talk to her rheumy today, he said to take her off all anti

inflammatories at this point, if the rash goes away restart the Lodine and

see if it does infact come back. Then we will know for sure the drug caused

it. AAAARRRGGGHHHH!!!! so frustrating and scary :-( AJ

[Guest guest]

be careful if u think shes allergic, taking her off the meds to see if thats

whats causing the rash and then putting her back on. my doc said allergic

reactions are 10 times worse each time you have one. thanks, brandy

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[Guest guest]

AJ,

Our thoughts and prayers are with you. Kelli hasn't had such good

luck with meds as of late either. They just pulled her off of

Naprosyn and we are back on Motrin because of possible bleeding ulcer

and GI problems. They are now trying to decide what to put her on.

Hang in there. We definitely feel your pain.

Angie

> Hi everyone,

> I have been posting lately, just not about Holly. Thought I

would catch

> everyone up on what is going on. Talked with her rheumie last week,

told he

> she is still having significant foot pain, to the point of not

being able to

> walk by evening. He said instead of upping the pred, he would like

to switch

> her to lodine, instead of motrin. Lodine is another type of anti

> inflammatory. So I started that on Saturday, as I don't like to

start new

> meds during the week when I can't watch her. So everything seemed

fine, the

> arthritis part of it seemed better controlled. Well, last night

(Monday

> night) I noticed a " different " rash on her and thought in looked

like petichi

> ( that is a rash you would get if your platelets are low). Well, I

talked

> with her gastroenterologist today as she had an appt with him

already, and he

> was extremely concerned about it, and sent us immediately for labs.

Well, her

> platelets are fine, but he believes her body has lost the ability

to make

> more platelets so took her off Lodine for atleast 48 hours, he said

put her

> back on motrin and see what happens with the rash. My thinking is

to call the

> rheumie tomorrow as I am afraid the arthritis is going to go into

an even

> worse flare because the motrin wasn't working to begin with as that

was why

> we changed :-( What a mess, I will keep you all posted

tomorrow, please

> keep holly in your prayers. Aj

>

>

>

[Guest guest]

Hi AJ,

Just wondering how Holly's doing today. Does she still have a rash?

How's she feeling? I was thinking about her and just hoping she's okay.

Aloha,

Georgina

ajaomom@... wrote:

>

> Kris,

> We have seen a hematologist a few times early on in the disease for her,

> it was a few years ago actually. We have not gotten that far with this issue

> yet. I did talk to her rheumy today, he said to take her off all anti

> inflammatories at this point, if the rash goes away restart the Lodine and

> see if it does infact come back. Then we will know for sure the drug caused

> it. AAAARRRGGGHHHH!!!! so frustrating and scary :-( AJ

[Guest guest]

Angie,

Do the Dr.s think the Naprosyn is more harmful to the tummy than the Motrin? I

have heard that Motrin is awful and they took Skyler off that a few months back

when he had black stool. Now he is on Motrin (starting last Friday) to help

ween him off Steroids.

He has a history of tummy trouble and I really want to be careful of using

something worse than Motrin.

~

Re: holly

AJ,

Our thoughts and prayers are with you. Kelli hasn't had such good

luck with meds as of late either. They just pulled her off of

Naprosyn and we are back on Motrin because of possible bleeding ulcer

and GI problems. They are now trying to decide what to put her on.

Hang in there. We definitely feel your pain.

Angie

> Hi everyone,

> I have been posting lately, just not about Holly. Thought I

would catch

> everyone up on what is going on. Talked with her rheumie last week,

told he

> she is still having significant foot pain, to the point of not

being able to

> walk by evening. He said instead of upping the pred, he would like

to switch

> her to lodine, instead of motrin. Lodine is another type of anti

> inflammatory. So I started that on Saturday, as I don't like to

start new

> meds during the week when I can't watch her. So everything seemed

fine, the

> arthritis part of it seemed better controlled. Well, last night

(Monday

> night) I noticed a " different " rash on her and thought in looked

like petichi

> ( that is a rash you would get if your platelets are low). Well, I

talked

> with her gastroenterologist today as she had an appt with him

already, and he

> was extremely concerned about it, and sent us immediately for labs.

Well, her

> platelets are fine, but he believes her body has lost the ability

to make

> more platelets so took her off Lodine for atleast 48 hours, he said

put her

> back on motrin and see what happens with the rash. My thinking is

to call the

> rheumie tomorrow as I am afraid the arthritis is going to go into

an even

> worse flare because the motrin wasn't working to begin with as that

was why

> we changed :-( What a mess, I will keep you all posted

tomorrow, please

> keep holly in your prayers. Aj

>

>

>

[Guest guest]

-

Naprosyn is supposed to have less gastrointestinal side effects than some of

the other NSAIDs like Motrin. had diarrhea when she first started

taking it, and again when her dosage was increased, but it lasted less than a

week. She has been getting some strange sores -- a few on her face and lots

on her bottom (but not like diaper rash). I believe it's because of the

Naprosyn.

Diane

[Guest guest]

,

Our Ped Rheumy says that Naprosyn is worse on GI Tract for Kelli than the

Motrin, but they may be switching the Motrin to something stronger anyway.

I don't know for sure, but we have noticed a difference in her GI symptoms

since they took her off the Naprosyn.

Angie

Re: Re: holly

>Angie,

>Do the Dr.s think the Naprosyn is more harmful to the tummy than the

Motrin? I have heard that Motrin is awful and they took Skyler off that a

few months back when he had black stool. Now he is on Motrin (starting last

Friday) to help ween him off Steroids.

>

>He has a history of tummy trouble and I really want to be careful of using

something worse than Motrin.

>

>~

> Re: holly

>

>

> AJ,

>

> Our thoughts and prayers are with you. Kelli hasn't had such good

> luck with meds as of late either. They just pulled her off of

> Naprosyn and we are back on Motrin because of possible bleeding ulcer

> and GI problems. They are now trying to decide what to put her on.

>

> Hang in there. We definitely feel your pain.

>

> Angie

>

>

>

> > Hi everyone,

> > I have been posting lately, just not about Holly. Thought I

> would catch

> > everyone up on what is going on. Talked with her rheumie last week,

> told he

> > she is still having significant foot pain, to the point of not

> being able to

> > walk by evening. He said instead of upping the pred, he would like

> to switch

> > her to lodine, instead of motrin. Lodine is another type of anti

> > inflammatory. So I started that on Saturday, as I don't like to

> start new

> > meds during the week when I can't watch her. So everything seemed

> fine, the

> > arthritis part of it seemed better controlled. Well, last night

> (Monday

> > night) I noticed a " different " rash on her and thought in looked

> like petichi

> > ( that is a rash you would get if your platelets are low). Well, I

> talked

> > with her gastroenterologist today as she had an appt with him

> already, and he

> > was extremely concerned about it, and sent us immediately for labs.

> Well, her

> > platelets are fine, but he believes her body has lost the ability

> to make

> > more platelets so took her off Lodine for atleast 48 hours, he said

> put her

> > back on motrin and see what happens with the rash. My thinking is

> to call the

> > rheumie tomorrow as I am afraid the arthritis is going to go into

> an even

> > worse flare because the motrin wasn't working to begin with as that

> was why

> > we changed :-( What a mess, I will keep you all posted

> tomorrow, please

> > keep holly in your prayers. Aj

> >

> >

> >

[Guest guest]

hi

keep us informed of how shes doing and how her mom is doing

when you sent the phone number you didnt add the area code

i am in Atlanta Ga

whats the room number

tell her we are praying for her

Robbin

[Guest guest]

What is Holly's last name so we can send cards...or a room number.

Holly

Hi everyone,

I am writing to you becuase Holly is in the hospital. She has been

there

since friday. They don't know if it is jra related. They are thinking it is

a

virual bacterial or MAS or Malignancy. If you would like to send cards or

call the address is Baystate Medical Center Childrens Hospital 759 Chestnut

ST. Springfield MA 01199 The phone number is 7942339.

From Holly's cousin

[Guest guest]

Hi all, I just heard from holly's cousin

Here is the all the info if you would like to send cards or call

Holly

Rm. 4143b

Baystate Medical Center Childrens Hospital

759 Chestnut ST.

Springfield MA 01199

The phone number is 7942339.

Holly

Hi everyone,

I am writing to you becuase Holly is in the hospital. She has been

there

since friday. They don't know if it is jra related. They are thinking it is

a

virual bacterial or MAS or Malignancy. If you would like to send cards or

call the address is Baystate Medical Center Childrens Hospital 759 Chestnut

ST. Springfield MA 01199 The phone number is 7942339.

From Holly's cousin

[Guest guest]

thanks so much for the thoughts and prayers karen, they are very appreciated

:-) n

[Guest guest]

Well we just got home, Holly has been in the hospital since friday, she still

isnt better, but she is stable thats why they sent her home, they figured i

could monitor her temp and watch for anything new at home, her rheumy

actually gave us her own personal pager number...........they dont have a

clue what it is, her spleen is huge, her liver is big, and she has huge nodes

in her neck, her temp hit 104 for like 2 weeks and she ofcourse has been

coughing for 5 months, and her labs were a mess, but not indicative of any

one thing, not even jra. They took her off all her meds to be positive it is

not related to meds. What they are thinking is viral or bacterial, macrophage

activation syndrome ( a flare of her jra that affects the bone marrow) and

then there is always malignancy. They have a million tests still pending,

they can take up to a month some of them, aarrrgghh!!!    So now we sit here

and wait for the other foot to drop so to speak, hertemp is low grade now,

but she seems very, very fragile, have to help her do everything, and even

with all the help she is still wiped out. Part of that could be do to the

fact that she hasnt eaten much of anything in the last week and a half. Being

she is still off meds, we are wating for the arthritis to show up, but it

seems to have strangely disappeared when the fever started for whatever this

new thing is. Oh well off to clean the house, so i can relax, it kind of fell

apart while i was at the hospital.........my niece was here with my teen, and

my husband and joey, you think they could have managed to keep up with it

right?????   not!!!!!!!!!!!!!!!   I will keep you all posted as i find out

more. We have to go to the doctors tomorrow, and probably more labs too.

Thanks for all your support everyone!!!!!    n

[Guest guest]

marion..my heart goes out to you and your family..i cried when i read your

post..It just makes me so angry and sad..when i hear of a child suffering. I

hope everything gets better for holly! Please keep us up to date on her

health and what they come up with. My parayers are with you!

karen

From: ajaomom@...

Reply-

Subject: Holly

Date: Wed, 18 Jul 2001 10:37:46 EDT

Well we just got home, Holly has been in the hospital since friday, she

still

isnt better, but she is stable thats why they sent her home, they figured i

could monitor her temp and watch for anything new at home, her rheumy

actually gave us her own personal pager number...........they dont have a

clue what it is, her spleen is huge, her liver is big, and she has huge

nodes

in her neck, her temp hit 104 for like 2 weeks and she ofcourse has been

coughing for 5 months, and her labs were a mess, but not indicative of any

one thing, not even jra. They took her off all her meds to be positive it is

not related to meds. What they are thinking is viral or bacterial,

macrophage

activation syndrome ( a flare of her jra that affects the bone marrow) and

then there is always malignancy. They have a million tests still pending,

they can take up to a month some of them, aarrrgghh!!! So now we sit here

and wait for the other foot to drop so to speak, hertemp is low grade now,

but she seems very, very fragile, have to help her do everything, and even

with all the help she is still wiped out. Part of that could be do to the

fact that she hasnt eaten much of anything in the last week and a half.

Being

she is still off meds, we are wating for the arthritis to show up, but it

seems to have strangely disappeared when the fever started for whatever this

new thing is. Oh well off to clean the house, so i can relax, it kind of

fell

apart while i was at the hospital.........my niece was here with my teen,

and

my husband and joey, you think they could have managed to keep up with it

right????? not!!!!!!!!!!!!!!! I will keep you all posted as i find out

more. We have to go to the doctors tomorrow, and probably more labs too.

Thanks for all your support everyone!!!!! n

[Guest guest]

gosh i cant believe how messed up the email is, i just realized this just

came through, i mailed it about 3 in the afternoon....wonder whats going

on......some people got it earlier then i did though too, very

strange.......sorry i must be tlaking jibberish, i just cant sleep :-(

n

[Guest guest]

Good for Holly. She just had to work through it in her own way. Hope they

continue to go this well.

Christy

[Guest guest]

--- ajaomom@... wrote:

> We did it, we did the 1st mtx injection. Poor holly

> fretted about it for an

> hour, before, then decided to do it with emla, then

> just decided to get it

> over with without it, and did great, even pushed the

> plunger and helped me

> count to three before we took it out. I am so

> relived the 1st one is over!!!

> Aj

>

Dear Friend,

I am so glad to hear Holly took her firs shot, it

never easy, I still don't give jenny hers. I have

a friend do it everyweek.

We have not Heard from Holly, and is hoping

all is well.

Always and

__________________________________________________

[Guest guest]

Wow that's great holly !!! Your such a brave girl:) And AJ you are well the best oh the best:) Blessing to you all for great results:):) Tree:):) holly We did it, we did the 1st mtx injection. Poor holly fretted about it for an hour, before, then decided to do it with emla, then just decided to get it over with without it, and did great, even pushed the plunger and helped me count to three before we took it out. I am so relived the 1st one is over!!! AjFor links to websites about arthritis and JRA, visit: http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Tree,

You are such a wonderful person!!!!!! Your thoughts always make me smile :-) Thanks so much for being you :-) Aj

[Guest guest]

Crista, I went and got a B12 shot and feel so much better. I tried the

sub-lingual pills and they didn't do much. I also started the protein

drink Isopure as suggest here on the Post-op group and it helps. I hope

you get to feeling better. Audry

>>> Ponca@... 09/12/02 05:36PM >>>

Holly

The chest pains must have been frightening. Glad it was just heart

burn.

I don't eat red meat. Don't have a taste for it. Have had deli turkey

slices & chicken though. To be honest, I don't have much of a taste

for anything at all. Am doing a lot of force feeding. Just feel sick.

Sleeping a lot. Get back todays blood work some time next week.

Will let you know whats up then.

The weight loss is good. 230/202 7-31-02 Just have to fine tune this

old motor. Like DR.R says, the flaps are down and all hands on the

flight deck, this plain is sputterin.

Kite you soon

Thanks Holly!

Hope you feel better soon too.

Crista

Ponca@...

[Guest guest]

Hello Holly, even though I suffer from Rheumatoid Arthritis (RA) I do have

the joint problems that you mention about. I was diagnosed at the age of

two with RA actually they said it was Juvenile Rheumatoid Arthritis and it

went into remission for about 8 years or so and then it came back and have

been with me ever since. I have been on all types of medications for 18

years now and still I have not found the right combo of meds to keep it

under control. I was told this past April that I needed a hip replacement

and knee replacement. So obviously this disease is more agressive then the

drugs can deal with. I have tried all kinds of drugs and most recently have

tried the drug Remicade but due to it burning it's self out, my

Rheumatologist decided to recently switch me to Enbrel but I will have to

wait until I've had my surgery (hip replacement) before I can start it. So

at the moment I'm in quite a flare and getting by until I have my surgery

(Nov. 14th) and then will take my Enbrel happily, waiting for the benefits!

Just remember that we are all different so the diseases and medication all

work differently in our bodies. One drug could work better for one person

then it does for another. Two people could have the same disease at the

same time and on the same drugs but the disease for some reason is more

damaging in one person then the other. So it is really hard to compare

ourselves to someone else. I do hope that you find the right combination of

drugs to keep your disease at bay.

Hope this helps some.

Marilyn

----Original Message Follows----

From: Hollycurrier@...

Reply-Stillsdisease

Stillsdisease

Subject: Re: Re: out of remission

Date: Thu, 3 Oct 2002 18:55:33 EDT

for a year and a half they have been trying to control this stills disease

of

mine and they can not and now i have to go to dartmouth hitchcock medicaal

center can anyone tell me if they are having severe degeneeration off their

joints and bones and also can anyone tell me if this is normal i was sick

10

tears ago with the same symptons from the sore throat to the joint pain

fevers and rash. could this stills have left me for 10 years?

thanks in advance for any input

take care

holly

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[Guest guest]

Dear Holly,

I was so worried about you and e-mailed you several times friend, but never

heard. Last time we talked, you were not feeling well at all. Please call

on me anytime and please feel free to e-mail me also so we can chat. I was

just in Lincoln New Hampshire two weeks ago and I am returning there this

weekend. I am trying to get away a little and d-stress myself. I am

leaving Friday night and will be there until late Sunday. Are you any where

near there Holly. My phone number is 1-860-376-4433 and e-mail my anytime

at cjlabbe01@... I hope that you are okay and I do think of you often.

I just loved your website.

Love, Sue #2

-- Re: Reminder - UK Chat at New Chat room

I am in new hampshire and can never find anyone on in the chat rooms hey

whats up

Maybe talk to ya at 8

[Guest guest]

i have been having a rough time and getting very depressed from it

I am about aan hour and 15 minutes from where you will be

we camp next dooe in north woodstock in the summer

my telephone # is 603-679-5903

Thanks so much for your concern

from lincoln if you take 93 south to exit 15e to 395

continue on 395 til the end you end up on route 4 continue on route 4 (you

will go half way around epsom circle about halfway mark from end of 393 till

me house) you will then still continue on route 4 going through Northwood

You will then take a right onto rooute 152 Nottingham

My house is on the right house #190 About 4.5 miles on 152

take careSue

love holly