Re: Hemoglobin/Caitlin's Bone Marrow Test

[Guest guest]

Dear Patty, I am not a doctor, but it sure sounds like systemic to me. Most of the systemic kids have to go on the steroids to get the disease under control. When n went on them, we finally got our little girl back. Sometimes it is tough to get off of them, but if it is systemic jra , maybe they will start her on a dmard when they start the steroids. Some kids might always need a low dose of steroids to maintain, but it is usually a minimal dose. Some words of advice about steroids--we gave them to n very early in the morning, before seven am. They can cause insomnia. Also, they can cause mood swings, makes kids hyper, and maybe depression. These are some of the things we saw, but doesn't mean it happens to all. They greatly increase appetite, so if she has to be on them awhile, you may want to have healthy snack food around. n lost 11 pounds at the onset, so she needed the extra weight gain. Good luck, and the beginning is usually the worse. Once it is under control, life will get lots easier. There will still be little fires to be put out, but not like the beginning. (n, 14, systemic)

Hemoglobin/Caitlin's Bone Marrow Test

Hello All and Merry Christmas/Happy Holidays:Caitlin's bone marrow test went better than I thought. It started off with a bang, literally. We were hit on the way into Children's. Someone bumped us from behind while we were stopped at a light. Our car is in the driveway with a seized engine (happened last week) and we have a friend's fairly new minivan to use for a couple of weeks. Of course, it happens when I am in a friends vehicle right. Thankfully, no damage. I digress: Caitlin, of course, freaked out when it was time for the needle. The doctor was absolutely wonderful. Sent her down for labs first and thought depending on what they said postpone the test (when Caitlin could be under general anesthesia) or do it then. By the way, they didn't appear to be aware for what we were there for in the beginning, not a confidence building feeling. She called the pediatrician and the pediatrician stated the rheumy wanted it done no matter what to rule out/rule in Leukemia. Quite honestly if we had to go back, yes, it would be great that she wouldn't feel a thing, but you have the risk of general plus she would be anxious every day and night until the test - I wanted it done then and there. So back up from the lab we started the biopsy. They gave Caitlin the IV (sprayed it first) which she tolerated pretty well. Then the 2 meds Fentinal (sp?) and Versed (sp?). She then injected pain medication directly on the hip (they had put Emla cream on beforehand) and that set Caitlin off. The doctor worked quickly (understanding already better to do it with Caitlin quickly and be done with it). The longer they take the worse and more agitated Caitlin gets. She did the biopsy itself under 5 minutes, thank God. It was horrible though. Caitlin screamed and screamed, it broke my heart:( I know the drugs help a bit, but I didn't like the way she was with them at all. Like a drugged up person, vacant look in the eye, scary to see that in my 11 year old:( Caitlin sent the machines off beeping, of course. Her heart rate shot up to 170+. Finally it was done and once Caitlin knew the needle was out started to calm down a little. Twenty minutes (of mom rubbing her back:) she was up eating some cookies and drinking her favorite drink Root Beer. Now the wait. The doctor walked it down herself and went back an hour later to read it with the lab person. She came back up and the initial reading was negative WHOHOOO I can breath again. She said the final would be in later that day, but a half hour or so later the other lab had read it also, negative, thank God. So I am feeling relieved and thankful for no leukemia, and the doctor says she is really concerned about Caitlin's hemoglobin level and something needs to be done right away. She asks when the rheumy is seeing her or what he is giving her after a negative result. Well, the rheumy is on a plane flying out of town for 2 weeks. She was not happy to say the least and couldn't believe there was no plan in place. She said Caitlin can't wait two weeks for him to come back and goes off to call the rheumy's answering service and our pediatrician. Of course, it is Christmas Eve Day. The pediatrician is gone already, but the rheumy on call calls back and we get a plan. Steroids start tomorrow am, repeat labs on Monday and seen on Wednesday by her colleague, neither of them are pediatric rheumy, but have been trained and see children on an emergency basis. So I am relieved regarding the leukemia, but am worried sick (an all to familiar feeling these days -- even lost 20 pounds now) about the hemoglobin and her heart. I always thought they fixed anemia with iron pills and iron rich food. How do steroids increase one's hemoglobin. Does it behave itself when it's back up? They told me to watch for fatigue, paleness and shortness of breath or palpitating heart. Well, she has been fatigued for the past month with this illness. She is pale to begin with. It's like saying tell me when you are hot when it's 120 degrees outside. How do you explain a palpitating heart to an 11 year old without scaring the heck out of her? Is a hemoglobin level 'normal' with JRA? Any information, experience and words of wisdom would be appreciated.Thanks to all of your well wishes, thoughts and prayers:)Take care.Patty

[Guest guest]

Patty:

Praise God and halleluyah!!!

I am so very glad that you were able to get the bone marrow results so

quickly. AND THAT IT WAS NEGATIVE!!!

I hope that the pred does the trick for Caitlin and she feels better very

soon. How horrible to have all this happen around Christmas, when it

seems like no one is around to administer the medical care that you need.

You have been and will continue to be in my thoughts and prayers.

and Rob 14 Spondy

On Thu, 25 Dec 2003 12:41:06 EST Emeraldsx3@... writes:

> Hello All and Merry Christmas/Happy Holidays:

>

> Caitlin's bone marrow test went better than I thought. It started

> off with a

> bang, literally. We were hit on the way into Children's. Someone

> bumped us

> from behind while we were stopped at a light. Our car is in the

> driveway with

> a seized engine (happened last week) and we have a friend's fairly

> new

> minivan to use for a couple of weeks. Of course, it happens when I

> am in a friends

> vehicle right. Thankfully, no damage. I digress: Caitlin, of

> course,

> freaked out when it was time for the needle. The doctor was

> absolutely wonderful.

> Sent her down for labs first and thought depending on what they said

> postpone

> the test (when Caitlin could be under general anesthesia) or do it

> then. By

> the way, they didn't appear to be aware for what we were there for

> in the

> beginning, not a confidence building feeling. She called the

> pediatrician and the

> pediatrician stated the rheumy wanted it done no matter what to rule

> out/rule

> in Leukemia. Quite honestly if we had to go back, yes, it would be

> great that

> she wouldn't feel a thing, but you have the risk of general plus she

> would be

> anxious every day and night until the test - I wanted it done then

> and there.

> So back up from the lab we started the biopsy. They gave Caitlin

> the IV

> (sprayed it first) which she tolerated pretty well. Then the 2 meds

> Fentinal

> (sp?) and Versed (sp?). She then injected pain medication directly

> on the hip

> (they had put Emla cream on beforehand) and that set Caitlin off.

> The doctor

> worked quickly (understanding already better to do it with Caitlin

> quickly and

> be done with it). The longer they take the worse and more agitated

> Caitlin

> gets. She did the biopsy itself under 5 minutes, thank God. It was

> horrible

> though. Caitlin screamed and screamed, it broke my heart:( I know

> the drugs

> help a bit, but I didn't like the way she was with them at all.

> Like a drugged

> up person, vacant look in the eye, scary to see that in my 11 year

> old:(

> Caitlin sent the machines off beeping, of course. Her heart rate

> shot up to 170+.

> Finally it was done and once Caitlin knew the needle was out started

> to calm

> down a little. Twenty minutes (of mom rubbing her back:) she was up

> eating

> some cookies and drinking her favorite drink Root Beer. Now the

> wait. The

> doctor walked it down herself and went back an hour later to read it

> with the lab

> person. She came back up and the initial reading was negative

> WHOHOOO I can

> breath again. She said the final would be in later that day, but a

> half hour

> or so later the other lab had read it also, negative, thank God. So

> I am

> feeling relieved and thankful for no leukemia, and the doctor says

> she is really

> concerned about Caitlin's hemoglobin level and something needs to be

> done right

> away. She asks when the rheumy is seeing her or what he is giving

> her after a

> negative result. Well, the rheumy is on a plane flying out of town

> for 2

> weeks. She was not happy to say the least and couldn't believe

> there was no plan

> in place. She said Caitlin can't wait two weeks for him to come

> back and

> goes off to call the rheumy's answering service and our

> pediatrician. Of course,

> it is Christmas Eve Day. The pediatrician is gone already, but the

> rheumy on

> call calls back and we get a plan. Steroids start tomorrow am,

> repeat labs

> on Monday and seen on Wednesday by her colleague, neither of them

> are pediatric

> rheumy, but have been trained and see children on an emergency

> basis.

>

> So I am relieved regarding the leukemia, but am worried sick (an all

> to

> familiar feeling these days -- even lost 20 pounds now) about the

> hemoglobin and

> her heart. I always thought they fixed anemia with iron pills and

> iron rich

> food. How do steroids increase one's hemoglobin. Does it behave

> itself when

> it's back up? They told me to watch for fatigue, paleness and

> shortness of

> breath or palpitating heart. Well, she has been fatigued for the

> past month with

> this illness. She is pale to begin with. It's like saying tell me

> when you

> are hot when it's 120 degrees outside. How do you explain a

> palpitating heart

> to an 11 year old without scaring the heck out of her? Is a

> hemoglobin level

> 'normal' with JRA? Any information, experience and words of wisdom

> would be

> appreciated.

>

> Thanks to all of your well wishes, thoughts and prayers:)

>

> Take care.

> Patty

>

>

>

>

[Guest guest]

Great news Patty!!! I'm thrilled for you. Okay, here is what I know

about the disease and low hemoglobin. You can feed your child all the

iron and iron products in the world but it won't make a difference.

This is not iron deficient anemia but anemia of chronic illness.

basically her immune system is so out of whack it can not produce the

cells and is destroying them. Auto immune meaning her body is

attacking itself. The steroids will reduce the inflammation and allow

her body to rest its attack on itself. She may need a transfusion but

if they can halt the attack on itself then she may not. Her body will

replenish itself. Hope that makes sense. And I am so relieved for you

and your daughter. I hope things settle down for her soon.

e

> Hello All and Merry Christmas/Happy Holidays:

>

> Caitlin's bone marrow test went better than I thought. It started

off with a

> bang, literally. We were hit on the way into Children's. Someone

bumped us

> from behind while we were stopped at a light. Our car is in the

driveway with

> a seized engine (happened last week) and we have a friend's fairly

new

> minivan to use for a couple of weeks. Of course, it happens when I

am in a friends

> vehicle right. Thankfully, no damage. I digress: Caitlin, of

course,

> freaked out when it was time for the needle. The doctor was

absolutely wonderful.

> Sent her down for labs first and thought depending on what they

said postpone

> the test (when Caitlin could be under general anesthesia) or do it

then. By

> the way, they didn't appear to be aware for what we were there for

in the

> beginning, not a confidence building feeling. She called the

pediatrician and the

> pediatrician stated the rheumy wanted it done no matter what to

rule out/rule

> in Leukemia. Quite honestly if we had to go back, yes, it would be

great that

> she wouldn't feel a thing, but you have the risk of general plus

she would be

> anxious every day and night until the test - I wanted it done then

and there.

> So back up from the lab we started the biopsy. They gave Caitlin

the IV

> (sprayed it first) which she tolerated pretty well. Then the 2

meds Fentinal

> (sp?) and Versed (sp?). She then injected pain medication directly

on the hip

> (they had put Emla cream on beforehand) and that set Caitlin off.

The doctor

> worked quickly (understanding already better to do it with Caitlin

quickly and

> be done with it). The longer they take the worse and more agitated

Caitlin

> gets. She did the biopsy itself under 5 minutes, thank God. It

was horrible

> though. Caitlin screamed and screamed, it broke my heart:( I know

the drugs

> help a bit, but I didn't like the way she was with them at all.

Like a drugged

> up person, vacant look in the eye, scary to see that in my 11 year

old:(

> Caitlin sent the machines off beeping, of course. Her heart rate

shot up to 170+.

> Finally it was done and once Caitlin knew the needle was out

started to calm

> down a little. Twenty minutes (of mom rubbing her back:) she was

up eating

> some cookies and drinking her favorite drink Root Beer. Now the

wait. The

> doctor walked it down herself and went back an hour later to read

it with the lab

> person. She came back up and the initial reading was negative

WHOHOOO I can

> breath again. She said the final would be in later that day, but a

half hour

> or so later the other lab had read it also, negative, thank God.

So I am

> feeling relieved and thankful for no leukemia, and the doctor says

she is really

> concerned about Caitlin's hemoglobin level and something needs to

be done right

> away. She asks when the rheumy is seeing her or what he is giving

her after a

> negative result. Well, the rheumy is on a plane flying out of town

for 2

> weeks. She was not happy to say the least and couldn't believe

there was no plan

> in place. She said Caitlin can't wait two weeks for him to come

back and

> goes off to call the rheumy's answering service and our

pediatrician. Of course,

> it is Christmas Eve Day. The pediatrician is gone already, but the

rheumy on

> call calls back and we get a plan. Steroids start tomorrow am,

repeat labs

> on Monday and seen on Wednesday by her colleague, neither of them

are pediatric

> rheumy, but have been trained and see children on an emergency

basis.

>

> So I am relieved regarding the leukemia, but am worried sick (an

all to

> familiar feeling these days -- even lost 20 pounds now) about the

hemoglobin and

> her heart. I always thought they fixed anemia with iron pills and

iron rich

> food. How do steroids increase one's hemoglobin. Does it behave

itself when

> it's back up? They told me to watch for fatigue, paleness and

shortness of

> breath or palpitating heart. Well, she has been fatigued for the

past month with

> this illness. She is pale to begin with. It's like saying tell me

when you

> are hot when it's 120 degrees outside. How do you explain a

palpitating heart

> to an 11 year old without scaring the heck out of her? Is a

hemoglobin level

> 'normal' with JRA? Any information, experience and words of wisdom

would be

> appreciated.

>

> Thanks to all of your well wishes, thoughts and prayers:)

>

> Take care.

> Patty

[Guest guest]

In a message dated 12/25/03 1:11:47 PM Eastern Standard Time,

bc.price@... writes:

<<

Dear Patty, I am not a doctor, but it sure sounds like systemic to me. >

Hi , Can you tell me what the difference is between systemic JRA,

strep-induced arthritis, reactive arthritis and Still's Disease? These are the

ones I am mostly hearing. I have done some research online, but haven't figured

the difference in them.

<< Most of the systemic kids have to go on the steroids to get the disease

under control. When n went on them, we finally got our little girl back.>>

How old was n when she was dx'd? Systemic? Does that mean this was

brought on by an infection she had?

<< Sometimes it is tough to get off of them, but if it is systemic jra ,

maybe they will start her on a dmard when they start the steroids.>>

What is a dmard?

<< Some kids might always need a low dose of steroids to maintain, but it is

usually a minimal dose.>>

Are steroids bad to be on for a lengthy of time? I read that they can

suppress one's immune system so you need to be careful around people who are

sick

with colds, flu, etc. How would anyone send their child to school then with so

many kids sick at any given time?

<< Some words of advice about steroids--we gave them to n very early in

the morning, before seven am. They can cause insomnia. Also, they can cause

mood swings, makes kids hyper, and maybe depression.>>

Thank you. We were told to give them to her in the am because she might not

sleep otherwise, but weren't told about the other things you mentioned.

<<Good luck, and the beginning is usually the worse. Once it is under

control, life will get lots easier. There will still be little fires to be put

out,

but not like the beginning.>>

Thank you . How long did it take to get n's under control? Is she

still on steroids? When they have flares are they usually put back on

steroids? Did n ever have a problem with a low hemoglobin. Thanks for

sharing

your experience.

Take care.

Patty

[Guest guest]

In a message dated 12/25/03 8:46:45 PM Eastern Standard Time,

snooksmama@... writes:

<<

Praise God and halleluyah!!!

I am so very glad that you were able to get the bone marrow results so

quickly. AND THAT IT WAS NEGATIVE!!!

I hope that the pred does the trick for Caitlin and she feels better very

soon. How horrible to have all this happen around Christmas, when it

seems like no one is around to administer the medical care that you need.

You have been and will continue to be in my thoughts and prayers.

and Rob 14 Spondy

>>

Hi :

Thank you so much for your kinds words. What has your experience been with

steroids with Rob? Yes, it really stinks that all of this is around the

holiday, of course, no time is good, but during the holidays it is just that

much

worse. I am thankful for negative results and that she isn't in to much pain

from the procedure. Finding medical help during the holidays truly is hard.

Even the pediatrician's office was closed today. Our previous one was, at

least, open after Christmas. Thank you for keeping us in your thoughts and

prayers, they are needed and appreciated.

I hope you had a nice holiday.

Take care.

Patty

[Guest guest]

In a message dated 12/26/03 2:28:11 AM Eastern Standard Time,

boundforlondon@... writes:

<<

Great news Patty!!! I'm thrilled for you.

Thanks e!

< Okay, here is what I know about the disease and low hemoglobin. You can

feed your child all the

iron and iron products in the world but it won't make a difference.

This is not iron deficient anemia but anemia of chronic illness.>>

Thank you for clarifying the difference in iron deficient anemia and chronic

illness. It make sense. Have you had any experience with anemia from chronic

illness?

< basically her immune system is so out of whack it can not produce the

cells and is destroying them. Auto immune meaning her body is

attacking itself. The steroids will reduce the inflammation and allow

her body to rest its attack on itself.>>

Once the steroids reduce the inflammation does the body stop attacking itself

forever or can it happen again?

<< She may need a transfusion but

if they can halt the attack on itself then she may not. Her body will

replenish itself. Hope that makes sense.>>

Her body with replenish the red blood cells and once again made them without

attacking them? It sounds like once the reaction settles down the attack

stops, is that correct?

<< And I am so relieved for you

and your daughter. I hope things settle down for her soon.>>

Thank you. I hope and pray everything settle down and she can feel better

and be like herself again. Today she even mentioned that she wanted to go back

to school.

Have a lot of people here missed a lot of school during the beginning of

their illness?

Take care.

Patty

[Guest guest]

Hi Patty,

Unfortunately I can't scroll through your E-mail while I respond,so I will miss alot of questions.

Systemic JRA and Stills disease are the same.Strep induced arthritis and reactive arthritis are pretty much the same.I have heard the same term for both,there is also post viral arthritis that you haven't mentioned.All but the systemic(Stills)you have a full recovery with mayby the exception of arthritis from actual rheumatic fever,which is usualy heart related.

Steroids are a very potent anti-inflamitory but no cure.The idea is the lowest dose with the fastest taper without the return of symptoms.With systemic children the idea is to control the fever,rash and organ envolvement.Easier said then done because if the joint symptoms get bad enough the systemic symptoms are right behind.Side effects differ for everyone but major mood swings and increased appetite are the most noticable at first.After a while fat starts to deposit on the base of the neck(buffalo hump)around the middle of the tummy and a very round ball shaped face.This is called Cushing syndrome caused by large amounts of cortisol.After even more time cataracts,glycoma,ulcers and avascular necrosis may occur among several other thingsWhen it's tapering time the trouble is the adrenal gland makes cortisol,without it we would die,because after just a few weeks the adrenal gland cant produce normal amounts on it's own.You have to take things very slow but you can expect the first three days to be rough.This is called steroid withdrawl.Go figure,the symptoms mimic arthritis because it cause arthritis.

DMARD therapy would most likely begin if there is a absolute diagnoses and 6 continuous weeks of symptoms have passed.This class of drugs take several weeks to months to work,so yes the steroids will be continued.Sometimes it takes more then 1 DMARD or you have to continue uping the dose of 1 or more to control symptoms,with or without the steroids.Like said before,with stubborn cases,contuious low doses of steroids may be neccessary.The first set of steroid symptoms dissapear on low doses by the way.

The whole iron thing is true.The labs can tell if it's iron depletion or chronic illness that causes the anemia.All the iron,from vitamins to food will not help.My son's hemaglobin has never been to low but he has been slightly anemic.RBC and hematocrit go along with the hemo,so any combination can tell things.

I won't make this post any longer by telling s tell but I will say.It took 3 DMARDS the maximum amount of Ibuprofin and steroids for 23 months and a couple joint drainages and steroid injections to get him under control.The 3rd and last DMARD isn't really a DMARD but a human biological.It was like a miricle the differance between night and day.Our son was a healthy little boy agan.Valentines will be 1 yr off the steroids.It's been 13 months with no symptoms what so ever.No Ibuprofin,1 DMARD has been gone and the second has gone from his maximum dose of 25mg Methotrexate as a shot to 10mg MTX orally.I know I probably missed a few answers but not to bad considering I have fog brain from a 5 and 8 yr old and we just went through a pack of 30 AA,4c and 4d batteries.

Happy Day After Christmas

Hugs

Becki and 5 1/2 systemicJRA since 22 months

[Guest guest]

Patty,

All the things you hear about low immunity and steroids and the immunosupressant therapy(DMARDS).Dont freak out!! I know of some kids on this list with really low immune systems,usually because of very unremitten disease that can not be controled.No live vaccines on DMARD therapy or steroids,currant research,from Georgina, do show that some don't think our kids are that immunosupressant from just DMARD therapy alone,so some say it's ok.Just throwing in a positive note.There are some things that should concern you.Fifths disease,chicken pox,strep,mono.All have the potential of being serious but not locked in stone.Flu shots are recommended though.Infections might hang around a couple days longer and while on steroids symptoms might not appear until very severe.My son hasn't had any serious infections and has only had 2 low grade fevers ,due to infection,since diagnoses.He did used to get the croup alot but nothing major.Once we had his tonsils and adenoids removed,no more croup.Just something that alot of healthy kids go through.He just gets whats going around,he has been going to the elementry school since shortly after diagnoses in the preschool program at 3 and 4 and now in Kindergarten.Our kids immune systems may not be up to par,even with some worse then others, but were not talking real chemo or an HIV/AIDS child either.

Call the superintendant of special education or your local school and set up an IEP(Individual education program).That offers any modifications even OT and PT and protects your childs rights to a free,public education.A whole post in it's own.

Hugs

Becki and 5 systemic

[Guest guest]

Patty,

Don't mean to overwhelm you,ok?Alot of children aren't put on steroids.It's reserved for severe cases of Poly arthritis with severe, uncontrolable swelling and pain and systemic children with classic stills symptoms not controlled by an NSAID.Systemic children requireing higher doses.Some kids have a very short trial of steroids just to see if it helps to diagnose.

Hugs

Becki and 5 systemic

[Guest guest]

Patty, Systemic and Still's is the same. Reactive and strep-induced I don't know much about, maybe someone else will chime in. Systemic means it is throughout their system, not just their joints. So it can cause inflammation (sometimes) in the liver, lymph nodes, spleen, lungs and heart. Those problems and the fever are sometimes the hardest to get under control.

n was 10 when she was diagnosed after being hospitalized. She got a horrible sore throat(not strep), fever and hurt everywhere. She couldn't walk or move. She had to go on steroids. She started on 20mg and after two weeks we started to wean. It took us 13 months to get off. She flared a year later and she was on them again for nine months. You have to go slow or their symptoms return and sometimes worse, and then you have to jump to an even higher dose. Steroids are a love/hate drug. The kids react quickly to them, i.e. by feeling better, but you want to get off of them or to the lowest possible dose. For a short time usage of them there isn't much to worry about, but the long term(months or years) there are lots of side effects. They cause weight gain rather quickly, stunts growth, causes diabetes and cataracts, and osteoporosis. I gave n extra calcium when she was on them for the osteoporosis. Just go slowly on the tapering of the steroids.

A dmard is a disease modifying anti rheumatoid drug. The steroids are like putting water on the fire, it will quench the fire. But arthritis will cause joint destruction and a dmard will stop it or slow it down. The most common is methotrexate in pills or injection. Then there are the new ones(you may have seen the commercials for enbrel or remicade) These act in a different way. Each child is very different and with all of the children on this listserve, I dare say that not two are on all of the same meds. Each child has to find their drug cocktail that works for them. So they may put your daughter on something, wait awhile(some of the meds take a few months to start working), and then change or add to it. Sorry for being so long. (n, 14, systemic)

Re: Hemoglobin/Caitlin's Bone Marrow Test

In a message dated 12/25/03 1:11:47 PM Eastern Standard Time, bc.price@... writes:<< Dear Patty, I am not a doctor, but it sure sounds like systemic to me. >Hi , Can you tell me what the difference is between systemic JRA, strep-induced arthritis, reactive arthritis and Still's Disease? These are the ones I am mostly hearing. I have done some research online, but haven't figured the difference in them. << Most of the systemic kids have to go on the steroids to get the disease under control. When n went on them, we finally got our little girl back.>>How old was n when she was dx'd? Systemic? Does that mean this was brought on by an infection she had? << Sometimes it is tough to get off of them, but if it is systemic jra , maybe they will start her on a dmard when they start the steroids.>>What is a dmard?<< Some kids might always need a low dose of steroids to maintain, but it is usually a minimal dose.>>Are steroids bad to be on for a lengthy of time? I read that they can suppress one's immune system so you need to be careful around people who are sick with colds, flu, etc. How would anyone send their child to school then with so many kids sick at any given time?<< Some words of advice about steroids--we gave them to n very early in the morning, before seven am. They can cause insomnia. Also, they can cause mood swings, makes kids hyper, and maybe depression.>>Thank you. We were told to give them to her in the am because she might not sleep otherwise, but weren't told about the other things you mentioned.<<Good luck, and the beginning is usually the worse. Once it is under control, life will get lots easier. There will still be little fires to be put out, but not like the beginning.>>Thank you . How long did it take to get n's under control? Is she still on steroids? When they have flares are they usually put back on steroids? Did n ever have a problem with a low hemoglobin. Thanks for sharing your experience.Take care.Patty

[Guest guest]

Hi Patty,

I'm so glad that test is over and done with and happy to hear about the

results. It sounds like Caitlin was very, just like so many of our

fellow JRA Warriors. Let her know we're proud of her for cooperating and

being a trooper. Hopefully there won't be anything quite so traumatic

like that, at least not in the foreseeable future!

We used to have a Mom in our group whose 5 year old son, Diego, was

being treated for Systemic JRA. A year or so later they realized that he

in fact had leukemia and, unfortunately, he didn't make it. Very sad.

If you've had a chance to read some of the reports I've sent in today,

you'll see that steroids are a common way to begin treating your

daughter's problem. Once the underlying disease process is being better

controlled the anemia should gradually improve, as well. My son took

prescription iron/ferritin tablets daily, sometimes twice daily, during

the worst of his anemia but it doesn't really make much of a difference

until the arthritis is being controlled well enough. This can be a

recurrent problem. Although the levels can be in the normal ranges when

the arthritis isn't so active, if and when your daughter's arthritis

flares up, after being stabilized for a time, the numbers may get low

again. At one point we had some worries that 's blood count

numbers might have been so extremely low not just from anemia of chronic

disease but because of undetected bleeding. He had an upper GI Series

done and we found that while there was marked inflammation in his

stomache lining, we were able to rule out that this was a cause of

bleeding/very low hemoglobin. That's when he started taking

cytotec/misopristol daily and for a short time he was told to

discontinue his NSAID. That didn't last too long, though. It was

incredible to find out so quickly that he had a much higher level of

pain when he wasn't taking his indomethacin twice a day, while I had

sort of thought it's effect was negligible. Not so. It was really

helping him.

You and Caitlin are both in our thoughts. Please be sure to keep us updated.

Take Care,

Georgina

Emeraldsx3@... wrote:

>Hello All and Merry Christmas/Happy Holidays:

>

>Caitlin's bone marrow test went better than I thought. It started off with a

>bang, literally. We were hit on the way into Children's. Someone bumped us

>from behind while we were stopped at a light. Our car is in the driveway with

>a seized engine (happened last week) and we have a friend's fairly new

>minivan to use for a couple of weeks. Of course, it happens when I am in a

friends

>vehicle right. Thankfully, no damage. I digress: Caitlin, of course,

>freaked out when it was time for the needle. The doctor was absolutely

wonderful.

>Sent her down for labs first and thought depending on what they said postpone

>the test (when Caitlin could be under general anesthesia) or do it then. By

>the way, they didn't appear to be aware for what we were there for in the

>beginning, not a confidence building feeling. She called the pediatrician and

the

>pediatrician stated the rheumy wanted it done no matter what to rule out/rule

>in Leukemia. Quite honestly if we had to go back, yes, it would be great that

>she wouldn't feel a thing, but you have the risk of general plus she would be

>anxious every day and night until the test - I wanted it done then and there.

> So back up from the lab we started the biopsy. They gave Caitlin the IV

>(sprayed it first) which she tolerated pretty well. Then the 2 meds Fentinal

>(sp?) and Versed (sp?). She then injected pain medication directly on the hip

>(they had put Emla cream on beforehand) and that set Caitlin off. The doctor

>worked quickly (understanding already better to do it with Caitlin quickly and

>be done with it). The longer they take the worse and more agitated Caitlin

>gets. She did the biopsy itself under 5 minutes, thank God. It was horrible

>though. Caitlin screamed and screamed, it broke my heart:( I know the drugs

>help a bit, but I didn't like the way she was with them at all. Like a drugged

>up person, vacant look in the eye, scary to see that in my 11 year old:(

>Caitlin sent the machines off beeping, of course. Her heart rate shot up to

170+.

>Finally it was done and once Caitlin knew the needle was out started to calm

>down a little. Twenty minutes (of mom rubbing her back:) she was up eating

>some cookies and drinking her favorite drink Root Beer. Now the wait. The

>doctor walked it down herself and went back an hour later to read it with the

lab

>person. She came back up and the initial reading was negative WHOHOOO I can

>breath again. She said the final would be in later that day, but a half hour

>or so later the other lab had read it also, negative, thank God. So I am

>feeling relieved and thankful for no leukemia, and the doctor says she is

really

>concerned about Caitlin's hemoglobin level and something needs to be done right

>away. She asks when the rheumy is seeing her or what he is giving her after a

>negative result. Well, the rheumy is on a plane flying out of town for 2

>weeks. She was not happy to say the least and couldn't believe there was no

plan

>in place. She said Caitlin can't wait two weeks for him to come back and

>goes off to call the rheumy's answering service and our pediatrician. Of

course,

>it is Christmas Eve Day. The pediatrician is gone already, but the rheumy on

>call calls back and we get a plan. Steroids start tomorrow am, repeat labs

>on Monday and seen on Wednesday by her colleague, neither of them are pediatric

>rheumy, but have been trained and see children on an emergency basis.

>

>So I am relieved regarding the leukemia, but am worried sick (an all to

>familiar feeling these days -- even lost 20 pounds now) about the hemoglobin

and

>her heart. I always thought they fixed anemia with iron pills and iron rich

>food. How do steroids increase one's hemoglobin. Does it behave itself when

>it's back up? They told me to watch for fatigue, paleness and shortness of

>breath or palpitating heart. Well, she has been fatigued for the past month

with

>this illness. She is pale to begin with. It's like saying tell me when you

>are hot when it's 120 degrees outside. How do you explain a palpitating heart

>to an 11 year old without scaring the heck out of her? Is a hemoglobin level

>'normal' with JRA? Any information, experience and words of wisdom would be

>appreciated.

>

>Thanks to all of your well wishes, thoughts and prayers:)

>

>Take care.

>Patty

>

[Guest guest]

oops. Somehow the word BRAVE got left out in that last post! I meant to

say that,

" ... Caitlin was very brave... "

Sorry about that.

Take Care,

Georgina

Georgina wrote:

> Hi Patty,

>

> I'm so glad that test is over and done with and happy to hear about the

> results. It sounds like Caitlin was very, just like so many of our

> fellow JRA Warriors. Let her know we're proud of her for cooperating and

> being a trooper. Hopefully there won't be anything quite so traumatic

> like that, at least not in the foreseeable future!

>

> We used to have a Mom in our group whose 5 year old son, Diego, was

> being treated for Systemic JRA. A year or so later they realized that he

> in fact had leukemia and, unfortunately, he didn't make it. Very sad.

>

> If you've had a chance to read some of the reports I've sent in today,

> you'll see that steroids are a common way to begin treating your

> daughter's problem. Once the underlying disease process is being better

> controlled the anemia should gradually improve, as well. My son took

> prescription iron/ferritin tablets daily, sometimes twice daily, during

> the worst of his anemia but it doesn't really make much of a difference

> until the arthritis is being controlled well enough. This can be a

> recurrent problem. Although the levels can be in the normal ranges when

> the arthritis isn't so active, if and when your daughter's arthritis

> flares up, after being stabilized for a time, the numbers may get low

> again. At one point we had some worries that 's blood count

> numbers might have been so extremely low not just from anemia of chronic

> disease but because of undetected bleeding. He had an upper GI Series

> done and we found that while there was marked inflammation in his

> stomache lining, we were able to rule out that this was a cause of

> bleeding/very low hemoglobin. That's when he started taking

> cytotec/misopristol daily and for a short time he was told to

> discontinue his NSAID. That didn't last too long, though. It was

> incredible to find out so quickly that he had a much higher level of

> pain when he wasn't taking his indomethacin twice a day, while I had

> sort of thought it's effect was negligible. Not so. It was really

> helping him.

>

> You and Caitlin are both in our thoughts. Please be sure to keep us updated.

>

> Take Care,

> Georgina

>

> Emeraldsx3@... wrote:

>

>

>>Hello All and Merry Christmas/Happy Holidays:

>>

>>Caitlin's bone marrow test went better than I thought. It started off with a

>>bang, literally. We were hit on the way into Children's. Someone bumped us

>

>>from behind while we were stopped at a light. Our car is in the driveway with

>

>>a seized engine (happened last week) and we have a friend's fairly new

>>minivan to use for a couple of weeks. Of course, it happens when I am in a

friends

>>vehicle right. Thankfully, no damage. I digress: Caitlin, of course,

>>freaked out when it was time for the needle. The doctor was absolutely

wonderful.

>>Sent her down for labs first and thought depending on what they said postpone

>>the test (when Caitlin could be under general anesthesia) or do it then. By

>>the way, they didn't appear to be aware for what we were there for in the

>>beginning, not a confidence building feeling. She called the pediatrician and

the

>>pediatrician stated the rheumy wanted it done no matter what to rule out/rule

>>in Leukemia. Quite honestly if we had to go back, yes, it would be great that

>>she wouldn't feel a thing, but you have the risk of general plus she would be

>>anxious every day and night until the test - I wanted it done then and there.

>>So back up from the lab we started the biopsy. They gave Caitlin the IV

>>(sprayed it first) which she tolerated pretty well. Then the 2 meds Fentinal

>>(sp?) and Versed (sp?). She then injected pain medication directly on the hip

>>(they had put Emla cream on beforehand) and that set Caitlin off. The doctor

>>worked quickly (understanding already better to do it with Caitlin quickly and

>>be done with it). The longer they take the worse and more agitated Caitlin

>>gets. She did the biopsy itself under 5 minutes, thank God. It was horrible

>>though. Caitlin screamed and screamed, it broke my heart:( I know the drugs

>>help a bit, but I didn't like the way she was with them at all. Like a

drugged

>>up person, vacant look in the eye, scary to see that in my 11 year old:(

>>Caitlin sent the machines off beeping, of course. Her heart rate shot up to

170+.

>>Finally it was done and once Caitlin knew the needle was out started to calm

>>down a little. Twenty minutes (of mom rubbing her back:) she was up eating

>>some cookies and drinking her favorite drink Root Beer. Now the wait. The

>>doctor walked it down herself and went back an hour later to read it with the

lab

>>person. She came back up and the initial reading was negative WHOHOOO I can

>>breath again. She said the final would be in later that day, but a half hour

>>or so later the other lab had read it also, negative, thank God. So I am

>>feeling relieved and thankful for no leukemia, and the doctor says she is

really

>>concerned about Caitlin's hemoglobin level and something needs to be done

right

>>away. She asks when the rheumy is seeing her or what he is giving her after a

>>negative result. Well, the rheumy is on a plane flying out of town for 2

>>weeks. She was not happy to say the least and couldn't believe there was no

plan

>>in place. She said Caitlin can't wait two weeks for him to come back and

>>goes off to call the rheumy's answering service and our pediatrician. Of

course,

>>it is Christmas Eve Day. The pediatrician is gone already, but the rheumy on

>>call calls back and we get a plan. Steroids start tomorrow am, repeat labs

>>on Monday and seen on Wednesday by her colleague, neither of them are

pediatric

>>rheumy, but have been trained and see children on an emergency basis.

>>

>>So I am relieved regarding the leukemia, but am worried sick (an all to

>>familiar feeling these days -- even lost 20 pounds now) about the hemoglobin

and

>>her heart. I always thought they fixed anemia with iron pills and iron rich

>>food. How do steroids increase one's hemoglobin. Does it behave itself when

>>it's back up? They told me to watch for fatigue, paleness and shortness of

>>breath or palpitating heart. Well, she has been fatigued for the past month

with

>>this illness. She is pale to begin with. It's like saying tell me when you

>>are hot when it's 120 degrees outside. How do you explain a palpitating heart

>>to an 11 year old without scaring the heck out of her? Is a hemoglobin level

>>'normal' with JRA? Any information, experience and words of wisdom would be

>>appreciated.

>>

>>Thanks to all of your well wishes, thoughts and prayers:)

>>

>>Take care.

>>Patty

>>

>

>

>

>

>

>

>

[Guest guest]

Patty,

" Have you had any experience with anemia from chronic

illness? "

My daughter joe (her nickname) is almost 17. She was diagnosed at

14. She has had problems with anemia. At first they thought it was

from a stomach bleed. Then they figured it was because she was having

a menstrual cycle every other week. But after we got those things

settled down,and after taking a ton of prescription strength iron

they determined it was an anemia of chronic disease. When her

arthritis is more active it drops, when it is calmer it rises.

" Once the steroids reduce the inflammation does the body stop

attacking itself forever or can it happen again? "

You will hear about flares. That is the name that the rheumatologists

(rheumys) give the disease when it is active. The steroids will stop

the flare but they will nto keep it at bay. Some children do go into

remission without treatmnet, others after treatment, others only with

chronic meidcation useage, others not at all. Unfortunately the

rheumies can not determine who will go into remission, what is the

best treatment etc It is a trial and error process. So, can it happen

again, yes, but as you have heard and will hear there are many

medications to treat the disease and different combinations for each

person that will control the disease.

" Her body with replenish the red blood cells and once again made them

without attacking them? It sounds like once the reaction settles

down the attack stops, is that correct? "

Her body will start making them when the flare has stopped. If the

flare is over then her body won't attack the new cells. Not every

time that she flares will her blood cells be affected. It can vary.

My daughter has polyarticular arthritis (5 or more joints). Hers is a

very active case but what is affected varies--always her knees,

sometimes hips, ankles, fingers, wrists, shoulders, etc etc. It

varies. Her blood count varies too.

" Have a lot of people here missed a lot of school during the

beginning of their illness? "

You'll hear lots of different experiences. Some are home schooled

because of missing so much or it is too difficult. Others have

special plans in place to address issues like PE, moving around

whenyou need to, etc. My daughter absolutely will not miss school. It

is her personality. She will push herself through the day and rarely

will miss a day. Others have missed quite a bit and had troubles with

the school system. It is better to have a program in place just in

case then to wait until it gets to be a bad situation. We have a 504

(disbility accomodation plan) in place. Contact your local arthritis

foundation and they can send you some brochures about your child and

arthritis and dealing with school etc.

Oh with the infection issue, you just be watchful and still let them

lead as normal of a life as possible. If she has not had all her

vaccinations you will probably be encouraged to get them. Once you

start on these meds to treat it you can not take some vaccines

because they are live vaccines (for example chicken pox). My daughter

has a negative titer (not sufficient exposure to chicken pox). We

have to be watchful about her exposure. Unfortunately most diseases

you just pick up somewhere. When she does get an illness she gets hit

hard and heavy and it makes her arthritis flare. You just watch and

be more vigilant. I used to be the more " wait and see " type with an

illness but now call soon to make sure it is not real serious. Once

she shows symptoms she is usually quite ill.

Best wishes for a quick treatment plan that will get her under good

control. Glad to hear she is feeling a little better. Steroids can be

miracle drugs. Be prepared for the weight gain. It is not uncommon to

put on a large amount of weight in a short amount of time with them.

This is because of the medication not because of diet issues. It can

be shocking to see. My daughter used to be a very skinny ballet

dancer when she is taking larger doses of steroids, like she is doing

currently, her body shape changes dramatically.

e, mom to joe who be 17 on the 29th

[Guest guest]

In a message dated 12/26/03 7:40:30 PM Eastern Standard Time,

bc.price@... writes:

<< So it can cause inflammation (sometimes) in the liver, lymph nodes,

spleen, lungs and heart. Those problems and the fever are sometimes the hardest

to

get under control. >>

Has anyone on this list had a child with inflammation in any of the above?

<<n was 10 when she was diagnosed after being hospitalized. She got a

horrible sore throat(not strep), fever and hurt everywhere. She couldn't walk

or move. She had to go on steroids.>>

This sounds exactly like Caitlin. Her initial strep culture came back

negative (by throat) and later that week negative (by throat) again. I am

wondering

if her body cleared the strep by itself and it is not the culprit itself or

it was the start of all of this and she truly has reactive or strep-induced

arthritis which, may (so they say) go away once her body's reaction stops. It

also has a lot the symptoms Caitlin has had. It's the unknown that is really

annoying.

<< She started on 20mg and after two weeks we started to wean. It took us 13

months to get off. She flared a year later and she was on them again for

nine months. You have to go slow or their symptoms return and sometimes worse,

and then you have to jump to an even higher dose. Steroids are a love/hate

drug. The kids react quickly to them, i.e. by feeling better, but you want to

get off of them or to the lowest possible dose. For a short time usage of them

there isn't much to worry about, but the long term(months or years) there are

lots of side >>

Caitlin is on 3 mls once a day right now, she just started 3 days ago. The

bottle says 15 mg/5 m. I need the call the pharmacist to see what the dosage

is. I am thinking the /5m means that she is getting 15 mg per day. Wow, 13

months to get back off. During that time do you try to get off or wean a little

and see what symptoms show? When she flared a year later was it easier than

the first time around? I am thinking the first time is the worst because it's

unexpected, but once we (parents) become educated and see symptoms we know to

start steroids or other meds right away, thus, I hope, lessening symptoms and

recovery time. My mother has a friend (she's 80 now) who was on steroids for

40+ years due to Chrons Disease. She, fortunately, didn't have serious side

effects. She did have the 'fat' face from them.

<>

Do you still give her extra calcium? Do a lot of parents with children with

JRA give their kids vitamins or anything else to help booster their immune

system?

<<A dmard is a disease modifying anti rheumatoid drug. The steroids are like

putting water on the fire, it will quench the fire. But arthritis will cause

joint destruction >>

Thank you for explaining that. Caitlin, right now and for the past 2 weeks

plus, hasn't complained of hurting joints like in the beginning. Maybe that is

why the rheumy hasn't explored this medication. It is only used for the

joints? Or does it calm the body's inflammation everywhere? Caitlin has

started

complaining today of her right jaw hurting towards the back near her ear and

lower jaw line. Has anyone else had this complaint. I am thinking 'it's a

joint, so it very well could be affected'. Just seems odd that all of a sudden

that's bothering her and no other joints. She could have done something to it

during the bone marrow biopsy. Perhaps, clenching her teeth so hard or

something.

<<Sorry for being so long.>>

I value all you have to say:) I wish there was someone close by that I knew

of.

Take care.

Patty

[Guest guest]

In a message dated 12/26/03 9:32:04 PM Eastern Standard Time, gmckin@...

writes:

<<

I'm so glad that test is over and done with and happy to hear about the

results. It sounds like Caitlin was very, just like so many of our

fellow JRA Warriors. Let her know we're proud of her for cooperating and

being a trooper. Hopefully there won't be anything quite so traumatic

like that, at least not in the foreseeable future!

>>

I will let her know. I pray there won't be anymore tests like that one. She

has a hard enough time with a blood draw.

<<We used to have a Mom in our group whose 5 year old son, Diego, was

being treated for Systemic JRA. A year or so later they realized that he

in fact had leukemia and, unfortunately, he didn't make it. Very sad.>>

How tragic. Makes me appreciate that, although it was a rough test to go

through, the rheumy was on top enough to question leukemia and order to test.

I have read the reports that you sent. Thank you. I have made some sense

out of them. I just hope and pray the steroids calm things down and her

hemoglobin levels rise and stay up.

l<<eeding/very low hemoglobin. That's when he started taking

cytotec/misopristol daily and for a short time he was told to>>

Is cytotec/misorpistol to boost hemoglobin levels? What was 's lowest

level?

Thank you for all you do Georgina.

Take caer.

Patty

[Guest guest]

In a message dated 12/26/03 9:36:08 PM Eastern Standard Time, gmckin@...

writes:

<< oops. Somehow the word BRAVE got left out in that last post! I meant to

say that, >>

LOL Georgina. I figured it was brave.

Take care.

Patty

[Guest guest]

In a message dated 12/26/03 10:30:46 PM Eastern Standard Time,

Arthurnator@... writes:

<< Systemic JRA and Stills disease are the same.Strep induced arthritis and

reactive arthritis are pretty much the same.I have heard the same term for

both,there is also post viral arthritis that you haven't mentioned.All but

the

systemic(Stills)you have a full recovery with mayby the exception of

arthritis from

actual rheumatic fever,which is usualy heart related.

Ste >>

So it looks like I need to be praying for strep-induced arthritis for a full

recovery. Interestingly enough I could have sworn her rheumy said with

Still's it will go away and not come back, hhhhmmmm. They initially (and still

are

not sure) thought she had rheumatic fever. The 'true' dx or RF is heart

damage, but it can also be RF without heart damage, just harder to dx. A friend

of

mines father had RF as a child and had no heart damage. She was checked out

at the hospital by the cardiologist who heard a murmur, though you can with a

fever, inflammation and rheumatoid disorders. He ordered an EKG and an ECHO

which both, thank God, came back normal. I do worry that it is RF and I will

have her followed by a cardiologist anyway. Makes me feel better.

<<Side effects differ for everyone but major mood swings and

increased appetite are the most noticeable at first.After a while fat starts

to>>

Hmmmm, Caitlin after crying with her jaw today, wanted to go out to Logan's

to get potato soup, figuring that was all she could handle with her jaw. So

off we went. She started to get kind of giddy with her sister . I

thought maybe, just maybe the steroid is kicking in and she is feeling better.

Now I wonder if it's a side effect from it. Could it be that fast? Three

doses?

<<This is called steroid withdrawl.Go figure,the symptoms mimic arthritis

because it cause arthritis.>>

How and when do the doctors decide to try to get off the steroids?

<<ook 3 DMARDS the maximum amount of Ibuprofin and steroids for 23 months and

a couple joint drainages and steroid injections to get him under control.The

3rd

and last DMARD isn't really a DMARD but a human biological.It was like a

miricle the differance between night and day.Our son was a healthy little boy

agan.Valentines will be 1 yr off the steroids.It's been 13 months with no

symptoms

what so ever.No Ibuprofin,1 DMARD has been gone and the second has gone from

his maximum dose of 25mg Methotrexate as a shot to 10mg MTX orally.>>

Wow, that was a long time and a lot of meds. Congrats on the 1 year

approaching:) Thirteen months with no symptoms WHOHOOO. It must feel like

Christmas

all year round there.

<<a pack of 30 AA,4c and 4d batteries.>>

It must be awful noisy at your house LOL. Thank you for answering my

questions Becki.

Take care.

Patty

[Guest guest]

In a message dated 12/26/03 10:55:46 PM Eastern Standard Time,

Arthurnator@... writes:

<<

positive note.There are some things that should concern you.Fifths

disease,chicken

pox,strep,mono.All have the potential of being serious but not locked in

stone.Flu shots a >>

It appears, or so they think (not dx'd yet) that Caitlin's problems are from

a strep infection that cleared from her throat without any symptoms and went

into her blood. This really scares me. When she complained of the sore throat

and had the fever, I took her right away into the doctors and her strep

culture was negative followed by another negative 3 days later. How do I catch

strep if she doesn't show 'classic' symptoms? The rheumy has stated that it's

not that she can never get strep again, but that it needs to be treated

immediately. I understand that, but don't know how to prevent it and catch it

early:(

<<My son

hasn't had any serious infections and has only had 2 low grade fevers ,due to

infection,since diagnoses.He did used to get the croup alot but nothing >>

What infection caused the 2 low grade fevers? Did they catch them early?

Speaking of fevers: Has anyone here had a child that has low fevers. Caitlin,

after having such high fevers, now is getting temperature readings of 95.7 and

96.7 under the arm. I know to add the degree, but it's still low.

<<.Once we had his tonsils and adenoids removed,no more croup.Just something

that>>

I wonder if we should do this to help prevent strep in Caitlin.

<<ll the superintendant of special education or your local school and set up

an IEP(Individual education program).That offers any modifications even OT

and

PT and protects your childs rights to a free,public education.A whole post in

it's own.>>

Caitlin has an IEP in place now for a learning disability. What type of

modifications were you thinking of? I can add pretty much anything onto her

IEP.

Thanks Becki.

Take care.

Patty

[Guest guest]

In a message dated 12/26/03 11:07:57 PM Eastern Standard Time,

Arthurnator@... writes:

<< systemic children with classic stills symptoms not controlled by

an NSAID.Systemic children requireing higher doses.Some kids have a very

short trial of steroids just to see if it helps to diagnose.

Hugs >>

Tell me again what is an NSAID? Naproxen? Anti-inflammatory med?

Thanks Becki.

Take care.

Patty

[Guest guest]

In a message dated 12/27/03 3:42:27 AM Eastern Standard Time,

boundforlondon@... writes:

<< My daughter joe (her nickname) is almost 17. She was diagnosed at

14. She has had problems with anemia. At first they thought it was

from a stomach bleed. Then they figured it was because she was having

a menstrual cycle every other week. But after we got those things

settled down,and after taking a ton of prescription strength iron

they determined it was an anemia of chronic disease. When her

arthritis is more active it drops, when it is calmer it rises.

>>

How did they figure out it wasn't from a stomach bleed. After Caitlin's bone

marrow biopsy the pediatrician spoke to me and stated that the rheumy wanted

to test for Leukemia and for stomach bleeding. Well they didn't do anything

for stomach bleeding (or not that I know of) unless it was with blood test,

because they did send her down to the lab for a blood draw. They did the bone

marrow biopsy, but that was for Leukemia. How do you keep a check on it? What

was her lowest level?

<<Her body will start making them when the flare has stopped. If the

flare is over then her body won't attack the new cells. Not every

time that she flares will her blood cells be affected. It can vary.

My daughter has polyarticular arthritis (5 or more joints). Hers is a

very active case but what is affected varies--always her knees,

sometimes hips, ankles, fingers, wrists, shoulders, etc etc. It

varies. Her blood count varies too.>>

How do you know when the flare is over? Blood or visual appearance and lack

of pain? Thank you for telling me what polyarticular arthritis is. Is your

daughter in constant pain or do the meds help her? So with poly you can also

have anemia and a drop in blood counts too.

<< Others have special plans in place to address issues like PE >>

Once we figure things out with Caitlin I will amend her IEP and meet with her

school. PE is a concern of mine as well as moving around the crowded

hallways. Our school is very crowded and if you can't hustle you are late for

class

and most likely, because of the lines, won't get to eat your lunch either.

That is unacceptable. You know, now this sounds neurotic, but I am afraid I am

getting that way with germs since they think this was strep related, I want

her to be able to leave her class before lunch to wash her hands before she

eats! Keep those germs at bay. Now if I could only get her to stop biting her

nails too, another germ pick up zone!

<<We have a 504

(disability accommodation plan) in place. Contact your local arthritis

foundation and they can send you some brochures about your child and

arthritis and dealing with school etc. >>

What is the 504 for? How does it help her get through her school day easier?

That's a great idea. I never even thought about the local arthritis

foundation. I will give them a ring. Fortunately, with the IEP in place

already, it

should be fairly easy to put other accommodations in place.

<<Oh with the infection issue, you just be watchful and still let them

lead as normal of a life as possible.>>

I am afraid of this. I am becoming germaphobic with any strep germ:(

<< If she has not had all her

vaccinations you will probably be encouraged to get them. Once you

start on these meds to treat it you cannot take some vaccines

because they are live vaccines (for example chicken pox).>>

Fortunately, they are all up to date. I do wonder what they will do about

the dentist and when she gets braces on. I have to take penicillin before any

dental work/surgery for my own heart. If she has to, she will be taking a lot

for the orthodontist. They go a lot at the beginning.

<< My daughter has a negative titer (not sufficient exposure to chicken pox).

We

have to be watchful about her exposure.>>

Caitlin and her sisters have all had the chicken pox. Caitlin, being the

last one to get them, got the worst of it.

<<Unfortunately most diseases

you just pick up somewhere. When she does get an illness she gets hit

hard and heavy and it makes her arthritis flare. You just watch and

be more vigilant. I used to be the more " wait and see " type with an

illness but now call soon to make sure it is not real serious. Once

she shows symptoms she is usually quite ill. >>

Exactly, they are everywhere, especially in the winter months. What does

your daughter get sick from most? Colds? Flu?

<<Best wishes for a quick treatment plan that will get her under good

control. Glad to hear she is feeling a little better.>>

Thank you:)

<< Steroids can be

miracle drugs. Be prepared for the weight gain. It is not uncommon to

put on a large amount of weight in a short amount of time with them.

This is because of the medication not because of diet issues. It can

be shocking to see>>

This will be hard on Caitlin. She is very petite all around and she enjoys

this.

<<. My daughter used to be a very skinny ballet

dancer when she is taking larger doses of steroids, like she is doing

currently, her body shape changes dramatically>>

How does she react to the body change?

Thank you for answering my questions e. Happy early 17th to Joe:)

Take care.

Patty

[Guest guest]

Non steroidal anti-inflammatory drug. Naproxen is just one of them. There are lots to choose from.

Re: Hemoglobin/Caitlin's Bone Marrow Test

In a message dated 12/26/03 11:07:57 PM Eastern Standard Time, Arthurnator@... writes:<< systemic children with classic stills symptoms not controlled by an NSAID.Systemic children requireing higher doses.Some kids have a very short trial of steroids just to see if it helps to diagnose.Hugs >>Tell me again what is an NSAID? Naproxen? Anti-inflammatory med? Thanks Becki.Take care.Patty

[Guest guest]

Hi Patty,

Yes an NSAID stands for non steroid anti inflamitory.Ibuprofin,Naprosyn,Celebrex,Vioxx,Indomethesin,etc,etc.Work wonders for some and others helps take the edge off.

Hugs

Becki

[Guest guest]

Hi Patty,

Due to the nature of the disease we were advised to bring in if his temp reaches 100.Never really thought of that as a temp until recently.

The first low grade fever was on the steroids and 2 DMARDS.He went to bed fine but woke up with a headache.He fell back asleep and woke up screaming.He would scream while awake then fall back asleep only to wake back up even worse.His temp only hit 100.5 but he was lethargic and screaming.I freaked out of cource,called the ped rheumy,who said take him to ER.While he was being weighed he hurled everywhere and that is when his nose was full of thick green stuff.Nothing before then.Diagnoses sinus infection.

Second infection was the week before Christmas.Him and his sister had chronic barky coughs.Sister had fevers was just approaching the 100 mark.Again freaked,kind of due to this flu season.Sister viral, viral with a secondary ear infection,and of cource no pain.

I wish I knew how to paste in parts of your posts,computer dummy,thats me.

I am just now realizing that Caitlen had negative throat culture for strep but positive in the blood.There is a mom here whos daughter goes to Hopkins or the Mayo clinic and it was just this past spring or summer that they were seeing ALOT of kids that were the same as Caitlen.It gives me a ray of hope that your little one may have strep induced arthritis.Patty,I have no idea how you can tell if she has strep if she shows no symptoms.Both of mine got Scarlet Fever in preschool/daycare.No fever,mild sore throat and just as wild as ever.My tip off is 1 complaint of a sore throat and 1 bout of vomiting or nausea.Not always acurate though because they have had the symptoms but haven't had strep in 3 yrs.Knock on wood.The best advice I can give is when in doubt,draw the blood.No fun for anyone but special kids need special care and better safe then sorry.

Sounds like you know your way around an IEP,so you know at any time you can have an addendum.Try and think about what kind of problems Caitlen is having.Can she carry her lunch tray,use the restroom by herself.Does she need more time to get where she needs to go,modified PE,BACKPACKS wheigh a ton these days,mayby an exta set at home.Fatigue and exhaustion,can she walk everywhere she needs to go,more absenteism then normal.Last thing you need is to be draged into court on truency charges.I don't know if she is under 504 or IDEA but with the new troubles might qualify for IDEA,You have the special ed due to learning disability so just one more qualafies you.Health impaired or Phyisical impairement.IDEA is harder and stricter to get and more bound by law.Nothing wrong with 504 if your school has money for OT and PT under it.Our school system you have to be under IDEA to get.

Differant doctors taper steroids differantly.Vanderbilt was very aggressive with ,down right kick him over the edge of the cliff,as I would say.It's such a learning experiance because each child is differant.Some go very slow giving the other drugs time to work.Unfortunately steroid tapers are not a science but an art.It takes a mother a while to know when they think it's safe to taper.Sometimes having to go against doctors orders and go slower or faster.

Patty,oh how I wish all us systemic moms could just close our eyes and beam you all our knowledge.You are on the right track though.The more you ask the more you will learn and there is nothing like real life experiances from other moms.You can only read the definition of JRA so many times.

Have you contacted your local Arthritis Foundation?Ask your rheumy if he has any patiants close to you and if so will they ask the other mom/moms to get in touch with you.Alot of AF have meetings once a month for Juvenile Arthritis and I met a mom whos daughter is just 9 months younger and systemic that only lives 1.5 miles away through our rheumy.The kids even go to the same school.

Yes,It's like Christmas everyday,but I didn't really know what it was like to have a little boy until the Enbrel.He makes his ped nervous and even the ped rheumies.They envision broken bones and stitches.When first seen the ped rheumy he was burning up and his joints were contracted so bad he was stuck in the fetal position.His last visit he jumped off the table yelling"cannon ball"

Hugs

Becki and 5 systemic

[Guest guest]

Patty,

You are right about RF not always causing serious heart damage.s Aunt had it as a child and is fine but several years ago when those diet pills became available again in the US she had an EKG or something that showed a heart defect and couldn't take them.She is now in her early to mid 40's and still fine.

I know Kim,Logan's mom responded to one of your first posts,Her son had a test done that showed very high amounts of exposure to strep so thats how they diagnosed.I want to say C reactive protein but don't hold me to it.

Hugs

Becki and 5systemic

[Guest guest]

Hi Patty,

Sorry for not being clear enough in that last post. The misoprostol was

prescribed because it's commonly used to help prevent ulcers in people

who take arthritis and pain medications that may produce ulcers, such as

the NSAIDs (non-steroidal anti-inflammatory drugs). It works by

protecting the stomach lining and decreasing stomach acid secretion. My

son was very anemic and a stool sample came back positive for blood so

he had an upper GI series done, which showed some stomache irritation

and inflammation. His hemoglobin levels were very low, but I'm not sure

of the exact numbers off-hand, so it was an added bit of protection. He

was taking the cytotec just once a day until recently, when we added a

pm dose too ... as we recently increased his daily Indomethacin from

50mg a day to 75mgs.

Take Care,

Georgina

Emeraldsx3@... wrote:

> In a message dated 12/26/03 9:32:04 PM Eastern Standard Time, gmckin@...

> writes:

>

> <<

> I'm so glad that test is over and done with and happy to hear about the

> results. It sounds like Caitlin was very, just like so many of our

> fellow JRA Warriors. Let her know we're proud of her for cooperating and

> being a trooper. Hopefully there won't be anything quite so traumatic

> like that, at least not in the foreseeable future!

> >>

> I will let her know. I pray there won't be anymore tests like that one. She

> has a hard enough time with a blood draw.

>

> <<We used to have a Mom in our group whose 5 year old son, Diego, was

> being treated for Systemic JRA. A year or so later they realized that he

> in fact had leukemia and, unfortunately, he didn't make it. Very sad.>>

>

> How tragic. Makes me appreciate that, although it was a rough test to go

> through, the rheumy was on top enough to question leukemia and order to test.

>

> I have read the reports that you sent. Thank you. I have made some sense

> out of them. I just hope and pray the steroids calm things down and her

> hemoglobin levels rise and stay up.

>

> l<<eeding/very low hemoglobin. That's when he started taking

> cytotec/misopristol daily and for a short time he was told to>>

>

> Is cytotec/misorpistol to boost hemoglobin levels? What was 's lowest

> level?

>

> Thank you for all you do Georgina.

>

> Take caer.

> Patty