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,

I would make sure before the Celebrex was given that Celeb should eat

something. As Celebrex can bother the tummy. I would make sure Labs were done

as

well. Most of the Arthritis Meds do cause a Liver level up and down. Again

watch for easy bruising and Nosebleeds.

As with any Arthritis meds you keep a eye on side effects. Celebrex did

help for awhile. She did bruise easy. If tummy issues start contact

the Dr so the Doctor can write a Presciption for Pepcid or Zantac to help the

tummy.

's Liver labs was done about once every 3 months.

Robbin

**************Biggest Grammy Award surprises of all time on AOL Music.

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was put on Celebrex as any another NSAID bothered his stomach. The

Celebrex luckily did not. He eventually maxed out on that (800 mgs a

day) and that was when the DMARD methotrexate was added. That helped him

a lot. Any NSAID can cause the stomach problems and bruising/bleeding,

that is why Chris' dr wanted him off of that ASAP.

We have had some kids on the list who have gone through MAS. It is very

serious. Perhaps someone will post with their experience.

I hope Caleb gets some relief soon, Michele ( 20, spondy)

________________________________

From: [mailto: ] On

Behalf Of nurse0300

Sent: Thursday, January 24, 2008 6:38 PM

Subject: caleb update

Caleb has been out of bed a total of 10 mintues today, long enough to

eat. I called the rheumy early in the morning to report this and

thought that maybe they would be concerned. Wel they finally called be

back at 7pm and they are going to start him on celebrex. He really has

only been out of bed 10 minutes this whole day. I thought they would

be a little more concerned than what they were but I guess they are

used to this kinda thing. SO we are going to start this med tomorrow

hope it helps. Our rheumy thinks that maybe the naproxyn was the cause

of the vomiting and diarrhea as well as the nosebleeds. So he thought

that it was best to try this med and Calebs liver labs are not that

great since starting the naproxyn. I have been reading up on MAS has

anyone ever had this and what exactly are the sx that you have seen.

The reason why I ask is some of the labs that tend to chage with this

have changed with Caleb and I want to be prepared. I have read that it

is very serious so I want to be on my toes since it seems to happen

with med changes.the rheumy mentioned MAS briefly when he decided not

to put him on any new meds but did decide to go ahead with the med

today. Hoping tomorrow is better than today!

(mom 2 Caleb ? systemic JRA)

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...did they rule out leukemia or other malignancies?? So sorry u are

going thru it..hope this gets resolved soon!

Hang in there,

cynde

caleb update

Caleb is still in the hospital they think he is going to be able to

come home tomorrow. but we have no answers.. which ittiates the love

out of me. Now they say we dont think its a rheumatoid problem

maybe its pshcyological....just bacause nothing else fits...psyc

says noo.. haha idiots. I talked to my favorite fellow well you all

know my intern story and she really as usual was no help at all.

they feel that Caleb will best be managed by peds and PT. I am so

upset and disguested. Shriners called us back about getting an appt

with them so I am calling them in the am. I feel so bad for caleb

he is having a hard time walking and is cryng because he dosent feel

like he should come home because he is not better still is sick

hurts and cant walk real well that is his words. I feel they all are

failing him. has anyone bee to this point where no one knows and no

one wants to take responsibility. I pray that he gets swelling

tonight or something to give us a clue. I am sooooooo tired and

feel like the health system has failed us. We again encountered

another dr that was nasty to us I have heard good and bad about

childrens in cincinnati and I am thinking that we need another

opinion. Caleb is suffering and in pain I just want to know if

anyone has even been in this situation.

SO Caleb is no better than when he went in to the hospital and we

know nothing.

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9:51 AM

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We've been praying for you and wondering how things were going.

Please hang in there.

Jinny (pauci 11)

On Fri, 01 Feb 2008 03:04:39 -0000 " nurse0300 " <nurse0300@...>

writes:

> Caleb is still in the hospital they think he is going to be able to

> come home tomorrow. but we have no answers.. which ittiates the love

>

> out of me. Now they say we dont think its a rheumatoid problem

> maybe its pshcyological....just bacause nothing else fits...psyc

> says noo.. haha idiots. I talked to my favorite fellow well you all

>

> know my intern story and she really as usual was no help at all.

> they feel that Caleb will best be managed by peds and PT. I am so

> upset and disguested. Shriners called us back about getting an appt

>

> with them so I am calling them in the am. I feel so bad for caleb

> he is having a hard time walking and is cryng because he dosent feel

>

> like he should come home because he is not better still is sick

> hurts and cant walk real well that is his words. I feel they all are

>

> failing him. has anyone bee to this point where no one knows and no

>

> one wants to take responsibility. I pray that he gets swelling

> tonight or something to give us a clue. I am sooooooo tired and

> feel like the health system has failed us. We again encountered

> another dr that was nasty to us I have heard good and bad about

> childrens in cincinnati and I am thinking that we need another

> opinion. Caleb is suffering and in pain I just want to know if

> anyone has even been in this situation.

> SO Caleb is no better than when he went in to the hospital and we

> know nothing.

>

>

>

>

>

>

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so far yes but they can always change their minds again. we spent 4 days on the

cancer floor that was nerve wracking. they really just dont have any answers.

except to rule something out then second guess theirselves.

cynde lee <blooms@...> wrote: ...did they rule out

leukemia or other malignancies?? So sorry u are going thru it..hope this gets

resolved soon!

Hang in there,

cynde

caleb update

Caleb is still in the hospital they think he is going to be able to

come home tomorrow. but we have no answers.. which ittiates the love

out of me. Now they say we dont think its a rheumatoid problem

maybe its pshcyological....just bacause nothing else fits...psyc

says noo.. haha idiots. I talked to my favorite fellow well you all

know my intern story and she really as usual was no help at all.

they feel that Caleb will best be managed by peds and PT. I am so

upset and disguested. Shriners called us back about getting an appt

with them so I am calling them in the am. I feel so bad for caleb

he is having a hard time walking and is cryng because he dosent feel

like he should come home because he is not better still is sick

hurts and cant walk real well that is his words. I feel they all are

failing him. has anyone bee to this point where no one knows and no

one wants to take responsibility. I pray that he gets swelling

tonight or something to give us a clue. I am sooooooo tired and

feel like the health system has failed us. We again encountered

another dr that was nasty to us I have heard good and bad about

childrens in cincinnati and I am thinking that we need another

opinion. Caleb is suffering and in pain I just want to know if

anyone has even been in this situation.

SO Caleb is no better than when he went in to the hospital and we

know nothing.

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Checked by AVG Free Edition.

Version: 7.5.516 / Virus Database: 269.19.15/1249 - Release Date: 1/29/2008 9:51

AM

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so sorry heather! keep us posted. did they do another bone marrow?

c

caleb update

Caleb is still in the hospital they think he is going to be able to

come home tomorrow. but we have no answers.. which ittiates the love

out of me. Now they say we dont think its a rheumatoid problem

maybe its pshcyological....just bacause nothing else fits...psyc

says noo.. haha idiots. I talked to my favorite fellow well you all

know my intern story and she really as usual was no help at all.

they feel that Caleb will best be managed by peds and PT. I am so

upset and disguested. Shriners called us back about getting an appt

with them so I am calling them in the am. I feel so bad for caleb

he is having a hard time walking and is cryng because he dosent feel

like he should come home because he is not better still is sick

hurts and cant walk real well that is his words. I feel they all are

failing him. has anyone bee to this point where no one knows and no

one wants to take responsibility. I pray that he gets swelling

tonight or something to give us a clue. I am sooooooo tired and

feel like the health system has failed us. We again encountered

another dr that was nasty to us I have heard good and bad about

childrens in cincinnati and I am thinking that we need another

opinion. Caleb is suffering and in pain I just want to know if

anyone has even been in this situation.

SO Caleb is no better than when he went in to the hospital and we

know nothing.

----------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.516 / Virus Database: 269.19.15/1249 - Release Date: 1/29/2008

9:51 AM

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- I am so sorry to hear that Caleb has not gotten a diagnosis yet.

I would think very seriously about Cincinnati Children's Hospital for another

opinion. When Hunter was hospitalized the first time - we had a pediatric

doctor tell us that it might be psychological - not only did I tell her to get

out of my child's room and not come back but I also filed a complaint to the

hospital administrator. When Hunter was diagnosed two weeks later - I

called that doctor at her office and told her what the diagnosis was so that in

the future if she came across another family that was have a mysterious illness

she would not be so quick to make a " wrong diagnosis " We are all here for

you - be strong. Sandi Ken Hunter (9 Systemic)

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

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,

Keep your head up ok. I know right now it is hard. Contact Cincin Hospital

and get a Appointment. Honestly with it was the same old thing it's

Growing Pains. Even the thing with oh she's the baby girl and she wants

attention is all. Well they all found out what it was even after 8 yrs of the

same

ole mess.

Remember JRA is not always a easy Diagnoses. As the Dr's want to see Labs

which prove it. They also work with the Physical Diagnoses. Get a second

opinion and third and fourth if needed do not just let 1 Dr tell you. You know

Caleb better than the Dr's.

Caleb needs you to be his Advocate and your the best to do this.

Something is not right and you want action. When Caleb has another pain issue

go on

to the ER. I did this several times as well so it would be Documented. Which

helped alot. Go to the ER and those Dr's see what you see at the time and

also see the pain the child is in as well.

Robbin

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

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he is in cincinnati childrens they say this can be delt with by his

ped and we do not need to f/u with anyone. meannies.

>

> ,

> Keep your head up ok. I know right now it is hard. Contact

Cincin Hospital

> and get a Appointment. Honestly with it was the same old

thing it's

> Growing Pains. Even the thing with oh she's the baby girl and she

wants

> attention is all. Well they all found out what it was even after 8

yrs of the same

> ole mess.

> Remember JRA is not always a easy Diagnoses. As the Dr's want to

see Labs

> which prove it. They also work with the Physical Diagnoses. Get a

second

> opinion and third and fourth if needed do not just let 1 Dr tell

you. You know

> Caleb better than the Dr's.

> Caleb needs you to be his Advocate and your the best to do

this.

> Something is not right and you want action. When Caleb has

another pain issue go on

> to the ER. I did this several times as well so it would be

Documented. Which

> helped alot. Go to the ER and those Dr's see what you see at the

time and

> also see the pain the child is in as well.

> Robbin

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

>

>

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we are in cincinnati childrens and are very dissapointed with them right now.

deerhuntert6@... wrote: - I am so sorry to hear that Caleb

has not gotten a diagnosis yet.

I would think very seriously about Cincinnati Children's Hospital for another

opinion. When Hunter was hospitalized the first time - we had a pediatric

doctor tell us that it might be psychological - not only did I tell her to get

out of my child's room and not come back but I also filed a complaint to the

hospital administrator. When Hunter was diagnosed two weeks later - I

called that doctor at her office and told her what the diagnosis was so that in

the future if she came across another family that was have a mysterious illness

she would not be so quick to make a " wrong diagnosis " We are all here for

you - be strong. Sandi Ken Hunter (9 Systemic)

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

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- I am so sorry that you are going through this. I just want

to make sure that I understand this coreectly. The doctors can't

find anything wrong with Caleb. The symptoms he has are pain and

fever? And because of just that, the doctors think it is

pyschological. The psychologist laughed at that diagnosis? Do they

tell you why it can't be systemic? I hope you will be able to get a

2nd opinion to get all this figured out.

& Grant/10,PsA,Uveitis

> >

> > ,

> > Keep your head up ok. I know right now it is hard. Contact

> Cincin Hospital

> > and get a Appointment. Honestly with it was the same old

> thing it's

> > Growing Pains. Even the thing with oh she's the baby girl and

she

> wants

> > attention is all. Well they all found out what it was even after

8

> yrs of the same

> > ole mess.

> > Remember JRA is not always a easy Diagnoses. As the Dr's want

to

> see Labs

> > which prove it. They also work with the Physical Diagnoses. Get

a

> second

> > opinion and third and fourth if needed do not just let 1 Dr tell

> you. You know

> > Caleb better than the Dr's.

> > Caleb needs you to be his Advocate and your the best to do

> this.

> > Something is not right and you want action. When Caleb has

> another pain issue go on

> > to the ER. I did this several times as well so it would be

> Documented. Which

> > helped alot. Go to the ER and those Dr's see what you see at

the

> time and

> > also see the pain the child is in as well.

> > Robbin

> >

> >

> >

> > **************Start the year off right. Easy ways to stay in

> shape.

> > http://body.aol.com/fitness/winter-exercise?

> NCID=aolcmp00300000002489

> >

> >

> >

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This sounds exactly what they told my dd. Since then she has talked with the ped

and he wants to get a second opinion. ..hope you are doing ok. It is hard

to be patient when your child is sick! Hang in there!

Cynde

Re: caleb update

he is in cincinnati childrens they say this can be delt with by his

ped and we do not need to f/u with anyone. meannies.

>

> ,

> Keep your head up ok. I know right now it is hard. Contact

Cincin Hospital

> and get a Appointment. Honestly with it was the same old

thing it's

> Growing Pains. Even the thing with oh she's the baby girl and she

wants

> attention is all. Well they all found out what it was even after 8

yrs of the same

> ole mess.

> Remember JRA is not always a easy Diagnoses. As the Dr's want to

see Labs

> which prove it. They also work with the Physical Diagnoses. Get a

second

> opinion and third and fourth if needed do not just let 1 Dr tell

you. You know

> Caleb better than the Dr's.

> Caleb needs you to be his Advocate and your the best to do

this.

> Something is not right and you want action. When Caleb has

another pain issue go on

> to the ER. I did this several times as well so it would be

Documented. Which

> helped alot. Go to the ER and those Dr's see what you see at the

time and

> also see the pain the child is in as well.

> Robbin

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

>

>

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