Re: Questions from a mother of a 19 month old with JRA

[Guest guest]

>

> Hello all who read this. I am the mother of a 19 month old who was

> just diagnosed with JRA. One day andria woke up with a stiff

leg

> and was walking as if she had a " peg leg. " At first I thought she

> picked it up out of habit of wearing her daddy's shoes and just

laughed

> it off. Well, once I realized that she was doing it all the time

and

> her knee began to swell, I knew something was not right. Let me

tell

> you it has taken us a while to get to this point (about 2 months to

be

> exact). After five emergency room trips, four different sets of X-

rays,

> and three different blood tests performed (which = 15 vials of

blood)

> we finally received an answer from orthopedic doctor on call at

the

> children's hospital we went to on our last ER visit. He said, " You

need

> to take your baby to a rheumatologist. " So, we did an found out

that

> her ANA factor was positive and she has Pauciarticular juvenile

> rheumatoid arthritis. I was happy to know that we finally got an

answer

> to the mystery of this swollen knee which could no longer be

> straightened.

> It has now been a month since her " Formal Diagnosis " and we are

just

> getting an appointment for a knee aspiration to be performed and a

> steroid injection. She is on Naprosyn but it is providing minimal

help.

>

> I guess the reason for me writing this is so that I can get some

kind

> of feedback from folks who understand what I am going through and

what

> andria is feeling. Am I doing the right thing, subjecting my

baby

> to this kind of treatment? What about uveitis? We have been dealing

> with this for a while...I don't want her vision to be affected

because

> longevitiy prior to her finally getting an appointment. Also, what

can

> I expect in the future or for the future? I want the truth whether

it

> is positive or negative. Sometimes the information the doctor gives

you

> is so vague and over my head, it means nothing. I need " real-world "

> terms so I can provide my baby with the best possible care

availiable

> and understand her good days and bad days.

>

> Any feedback would be so appreciated.

>

Good morning! I'm about a year ahead of you, but still asking most

of the same questions. My daughter was 3 when she woke up screaming

at 5am. She couldn't walk, couldn't sit, couldn't lift her arms...

After doctors and tests, getting better, getting worse again and then

still better but never 100% she was diagnosed with JIA. For us it is

clear. The medicine makes a huge difference. The blood work is

needed to protect her systems from damage from strong medicines. It

is a balancing act that appears to be constant. Thanks to her

medicines she has no permanent damage to any of her joints. She is

playing soccer and feeling like a rockstar this week. Two weeks

ago " everything hurt " and I was giving her piggyback rides

everywhere. Yesterday her bloodwork came back with things too high

and things too low. So we're lowering one of the meds and crossing

our fingers she won't flare again. In 1 1/2 years she has only had

one other short stint at feeling " normal " . Please let this one last!!

I guess I'm trying to tell you, by example, that your daughter has an

unpredictable, constantly shifting disease that will require on-going

treatment. There will be ups and downs. She could go into remission

and never have an issue again. This could be a disease she will deal

with her whole life. She is super young though and will see it as a

normal aspect of her life. I tell my kids that everyone has

something they have to deal with in their lives. 's is

arthritis.

" Real world advice " from me is: you are in a whole new " real

world " . Listen to your daughter. Follow her lead. Our doctors keep

telling us that kids this young don't tell you they are tired if they

aren't. They don't complain of pain if they don't feel pain. You

will see your daughter do things with a smile when you see she is in

pain and you will want her to stop. Don't stop her but remind her

that it's okay to take a break when she needs to. When she comes to

you unwell take great care of her. Baths are fabulous, as is

swimming. At her worst my daughter just wants to lay on me. I think

I'm a human heating pad for her.

As for the eye stuff - get her checked out as soon as you can but

don't worry. Uveitis is only a possible condition related to the

JIA. I was scared to death before our first apt. But she was fine

and probably your daughter will be too. If not, they can treat that

too. You have enough known issues to deal with try not to add that

to your list. If she does have it, then worry about it and treat it

and get her better. I know, easier said than done.

This will get easier, at least I tell myself that every day. And

remember it is a whole lot harder for you than your daughter. To her

this is just how life is. You are taking great care of her and

getting her the treatment she needs so she can continue to lead a

healthy, happy life with minimal interferance from arthritis. Good

luck!!!

[Guest guest]

Welcome, you've come to the right place . Our daughters' stories

are actually very similar. It started in Isabelle's knee right at

age 2. It took us 12 appts. to the Ped, ortho, and finally the

rhuemy (took 4 months to even get an appt. to see a rheumy) to

finally get our dx. Naprosyn didn't work at all for Isabelle either

and she was left with a contracture in her left knee. We found a

Pediatric Rheumy eventually and she went straight to the steroid

injection. That was a miracle at the time and I definitely can

attest to this treatment being SO worth it. She had no swelling and

no pain for 4 months and no need for any other medications (no more

throwing up from Naprosyn or Ibuprofen which was constant for us).

However, her JRA spread to both ankles and the other knee 4 months

after the steroid injection. We got aggressive and she was put on

Methotrexate injections, weekly. I am happy to tell you that

Isabelle has been in remission (technically a " medicated remission)

for over a year now. She is doing just fine. She did have 6 months

of PT to un-do the problems caused by leaving her on the Naprosyn too

long when it wasn't working (the reason we left the first rheumy).

She had leg length difference and now that's gone and she has a full

range of motion in the knee.

I'm hoping to give you some hope. No one can foresee what your

daughter's future holds...it's a hard thing to come to terms with

having a child diagnosed with this disease. We are lucky to have so

many options now that weren't there even just several years ago.

Since your baby is ANA positive, you will want to see an eye

specialist right away. We go every 4-6 months and so far, so good.

But you seem to already have learned a lot and are well aware of the

risks in not staying up on that.

Feel free to email me with any questions. HTH, Hadley

(Isabelle, 4.5 yrs, JRA, , 2 yrs, asthma, Katharine, 14 yrs,

n, 16 years).

>

> Hello all who read this. I am the mother of a 19 month old who was

> just diagnosed with JRA. One day andria woke up with a stiff

leg

> and was walking as if she had a " peg leg. " At first I thought she

> picked it up out of habit of wearing her daddy's shoes and just

laughed

> it off. Well, once I realized that she was doing it all the time

and

> her knee began to swell, I knew something was not right. Let me

tell

> you it has taken us a while to get to this point (about 2 months to

be

> exact). After five emergency room trips, four different sets of X-

rays,

> and three different blood tests performed (which = 15 vials of

blood)

> we finally received an answer from orthopedic doctor on call at

the

> children's hospital we went to on our last ER visit. He said, " You

need

> to take your baby to a rheumatologist. " So, we did an found out

that

> her ANA factor was positive and she has Pauciarticular juvenile

> rheumatoid arthritis. I was happy to know that we finally got an

answer

> to the mystery of this swollen knee which could no longer be

> straightened.

> It has now been a month since her " Formal Diagnosis " and we are

just

> getting an appointment for a knee aspiration to be performed and a

> steroid injection. She is on Naprosyn but it is providing minimal

help.

>

> I guess the reason for me writing this is so that I can get some

kind

> of feedback from folks who understand what I am going through and

what

> andria is feeling. Am I doing the right thing, subjecting my

baby

> to this kind of treatment? What about uveitis? We have been dealing

> with this for a while...I don't want her vision to be affected

because

> longevitiy prior to her finally getting an appointment. Also, what

can

> I expect in the future or for the future? I want the truth whether

it

> is positive or negative. Sometimes the information the doctor gives

you

> is so vague and over my head, it means nothing. I need " real-world "

> terms so I can provide my baby with the best possible care

availiable

> and understand her good days and bad days.

>

> Any feedback would be so appreciated.

>

[Guest guest]

Welcome! For us the Uveitis portion of this disease has been the

most frustrating. Grant went at least 5 years with undected

Uveitis. He does have some damage to one eye but it hasn't affected

his vision thankfully. I tell you that to make you feel better

about going 4 months or so without seeing an Opth. I would highly

recommend seeing a Ped Opth. though. It sounds like you have done

research and that is what I did when we were 1st dx (and still do)a

year ago. It helps me so much to know what is going on and it also

helps me understand what the doctor is talking about. This group is

great for that. I have learned a lot here from others experiences.

I hope you daughter finds relief soon!

& Grant (11, PsA/Uveitis)

> >

> > Hello all who read this. I am the mother of a 19 month old who

was

> > just diagnosed with JRA. One day andria woke up with a

stiff

> leg

> > and was walking as if she had a " peg leg. " At first I thought

she

> > picked it up out of habit of wearing her daddy's shoes and just

> laughed

> > it off. Well, once I realized that she was doing it all the time

> and

> > her knee began to swell, I knew something was not right. Let me

> tell

> > you it has taken us a while to get to this point (about 2 months

to

> be

> > exact). After five emergency room trips, four different sets of

X-

> rays,

> > and three different blood tests performed (which = 15 vials of

> blood)

> > we finally received an answer from orthopedic doctor on call at

> the

> > children's hospital we went to on our last ER visit. He

said, " You

> need

> > to take your baby to a rheumatologist. " So, we did an found out

> that

> > her ANA factor was positive and she has Pauciarticular juvenile

> > rheumatoid arthritis. I was happy to know that we finally got an

> answer

> > to the mystery of this swollen knee which could no longer be

> > straightened.

> > It has now been a month since her " Formal Diagnosis " and we are

> just

> > getting an appointment for a knee aspiration to be performed and

a

> > steroid injection. She is on Naprosyn but it is providing

minimal

> help.

> >

> > I guess the reason for me writing this is so that I can get some

> kind

> > of feedback from folks who understand what I am going through

and

> what

> > andria is feeling. Am I doing the right thing, subjecting my

> baby

> > to this kind of treatment? What about uveitis? We have been

dealing

> > with this for a while...I don't want her vision to be affected

> because

> > longevitiy prior to her finally getting an appointment. Also,

what

> can

> > I expect in the future or for the future? I want the truth

whether

> it

> > is positive or negative. Sometimes the information the doctor

gives

> you

> > is so vague and over my head, it means nothing. I need " real-

world "

> > terms so I can provide my baby with the best possible care

> availiable

> > and understand her good days and bad days.

> >

> > Any feedback would be so appreciated.

> >

>

[Guest guest]

Hello and welcome,

My name is Lani and my daughter has ANA + Poly JRA. You have

come to a great place for information ans support. I was very scarred

to have start the serious meds too. she was 11 months when

symptoms started, and 17 months when finally diagnosed. We watched her

regress further and further. The meds like Methotrexate, Enbrel,

Humira in combo with the Naproxen do make a difference. is on

the highest dose of Methotrexate allowed for her age/weight, and

Naproxen twice daily. This has helped, but the possibility of

injections is always one doctors appointment away. Hang in there

sweetie, and ask her doctor every question in the book.

We have been lucky regarding the Uveitis. has been clear all

along. We have her eyes checked every 2 months, and cross our fingers

xxxxx every time. I hope they get her disease under control, and that

she is pain free.

Best wishes to you all

Lani

> >

> > Hello all who read this. I am the mother of a 19 month old who was

> > just diagnosed with JRA. One day andria woke up with a stiff

> leg

> > and was walking as if she had a " peg leg. " At first I thought she

> > picked it up out of habit of wearing her daddy's shoes and just

> laughed

> > it off. Well, once I realized that she was doing it all the time

> and

> > her knee began to swell, I knew something was not right. Let me

> tell

> > you it has taken us a while to get to this point (about 2 months to

> be

> > exact). After five emergency room trips, four different sets of X-

> rays,

> > and three different blood tests performed (which = 15 vials of

> blood)

> > we finally received an answer from orthopedic doctor on call at

> the

> > children's hospital we went to on our last ER visit. He said, " You

> need

> > to take your baby to a rheumatologist. " So, we did an found out

> that

> > her ANA factor was positive and she has Pauciarticular juvenile

> > rheumatoid arthritis. I was happy to know that we finally got an

> answer

> > to the mystery of this swollen knee which could no longer be

> > straightened.

> > It has now been a month since her " Formal Diagnosis " and we are

> just

> > getting an appointment for a knee aspiration to be performed and a

> > steroid injection. She is on Naprosyn but it is providing minimal

> help.

> >

> > I guess the reason for me writing this is so that I can get some

> kind

> > of feedback from folks who understand what I am going through and

> what

> > andria is feeling. Am I doing the right thing, subjecting my

> baby

> > to this kind of treatment? What about uveitis? We have been dealing

> > with this for a while...I don't want her vision to be affected

> because

> > longevitiy prior to her finally getting an appointment. Also, what

> can

> > I expect in the future or for the future? I want the truth whether

> it

> > is positive or negative. Sometimes the information the doctor gives

> you

> > is so vague and over my head, it means nothing. I need " real-world "

> > terms so I can provide my baby with the best possible care

> availiable

> > and understand her good days and bad days.

> >

> > Any feedback would be so appreciated.

> >

>

[Guest guest]

Again Welcome!

I have to say I am so glad that I found this group and you will realize

that this is an awesome bunch and we are always there for each other.

My son was diagnosed with Pauci JRA when he was 3.5 and started very

much the same way as your daughter. We noticed that his left knee was

swollen and he was limping. We thought maybe he had fallen and hurt it

but we couldn't recall anything. We got into the PCP right away and he

took xrays and had us come back a week later. He did xrays again and

again they came back normal so he decided to do blood work on him. His

sed rate was really high so he then referred us to a Rheumatologist. We

got into the specialist about a week later and she diagnosed him right

on the spot. The week after we had a joint aspiration/injection and it

went well, we also had to cast him off and on for about a month because

the limping he had done was causing his leg to kind of deform. We also

found out that he was ANA+ so we went to the ophthalmologist asap. It

was a good thing that we took him in when we did because his eyes were

already severely affected from Uveitis. Had we not taken him in, he

could have gone blind! We started on Methotrexate injectable and Steriod

drops every hour! This calmed his eyes down for a while and then they

flared again so we had to add Humira to his med list. At last check up

at the Optho, he was free of inflammation so the dr. thinks the Humira

is helping. I know how scary the procedure must seem but after the

injection/aspiration, he was moving SO much better and that alone helped

me to see that we did the right thing by him. Know that you are not

alone and again if you have any questions or just want to vent please

email me.

Lots of prayers,

marie

Mommy to Bradley (Pauci JRA, Uveitis and ANA+) Charlie and

hadley_messner wrote:

>

> Welcome, you've come to the right place . Our daughters' stories

> are actually very similar. It started in Isabelle's knee right at

> age 2. It took us 12 appts. to the Ped, ortho, and finally the

> rhuemy (took 4 months to even get an appt. to see a rheumy) to

> finally get our dx. Naprosyn didn't work at all for Isabelle either

> and she was left with a contracture in her left knee. We found a

> Pediatric Rheumy eventually and she went straight to the steroid

> injection. That was a miracle at the time and I definitely can

> attest to this treatment being SO worth it. She had no swelling and

> no pain for 4 months and no need for any other medications (no more

> throwing up from Naprosyn or Ibuprofen which was constant for us).

>

> However, her JRA spread to both ankles and the other knee 4 months

> after the steroid injection. We got aggressive and she was put on

> Methotrexate injections, weekly. I am happy to tell you that

> Isabelle has been in remission (technically a " medicated remission)

> for over a year now. She is doing just fine. She did have 6 months

> of PT to un-do the problems caused by leaving her on the Naprosyn too

> long when it wasn't working (the reason we left the first rheumy).

> She had leg length difference and now that's gone and she has a full

> range of motion in the knee.

>

> I'm hoping to give you some hope. No one can foresee what your

> daughter's future holds...it's a hard thing to come to terms with

> having a child diagnosed with this disease. We are lucky to have so

> many options now that weren't there even just several years ago.

>

> Since your baby is ANA positive, you will want to see an eye

> specialist right away. We go every 4-6 months and so far, so good.

> But you seem to already have learned a lot and are well aware of the

> risks in not staying up on that.

>

> Feel free to email me with any questions. HTH, Hadley

>

> (Isabelle, 4.5 yrs, JRA, , 2 yrs, asthma, Katharine, 14 yrs,

> n, 16 years).

>

>

> >

> > Hello all who read this. I am the mother of a 19 month old who was

> > just diagnosed with JRA. One day andria woke up with a stiff

> leg

> > and was walking as if she had a " peg leg. " At first I thought she

> > picked it up out of habit of wearing her daddy's shoes and just

> laughed

> > it off. Well, once I realized that she was doing it all the time

> and

> > her knee began to swell, I knew something was not right. Let me

> tell

> > you it has taken us a while to get to this point (about 2 months to

> be

> > exact). After five emergency room trips, four different sets of X-

> rays,

> > and three different blood tests performed (which = 15 vials of

> blood)

> > we finally received an answer from orthopedic doctor on call at

> the

> > children's hospital we went to on our last ER visit. He said, " You

> need

> > to take your baby to a rheumatologist. " So, we did an found out

> that

> > her ANA factor was positive and she has Pauciarticular juvenile

> > rheumatoid arthritis. I was happy to know that we finally got an

> answer

> > to the mystery of this swollen knee which could no longer be

> > straightened.

> > It has now been a month since her " Formal Diagnosis " and we are

> just

> > getting an appointment for a knee aspiration to be performed and a

> > steroid injection. She is on Naprosyn but it is providing minimal

> help.

> >

> > I guess the reason for me writing this is so that I can get some

> kind

> > of feedback from folks who understand what I am going through and

> what

> > andria is feeling. Am I doing the right thing, subjecting my

> baby

> > to this kind of treatment? What about uveitis? We have been dealing

> > with this for a while...I don't want her vision to be affected

> because

> > longevitiy prior to her finally getting an appointment. Also, what

> can

> > I expect in the future or for the future? I want the truth whether

> it

> > is positive or negative. Sometimes the information the doctor gives

> you

> > is so vague and over my head, it means nothing. I need " real-world "

> > terms so I can provide my baby with the best possible care

> availiable

> > and understand her good days and bad days.

> >

> > Any feedback would be so appreciated.

> >

>

>

[Guest guest]

I agree with everything that was said.....

The knee injection is likely to help a lot. Most respond very well to it.

Uveitis is hopefully not present and if it is, they can treat it. Its not

likely to have done damage ... a lot of kids who do have it and have had it

a long time dont really have damage from it.. not saying it cant happen but

its likely your baby is fine.

In terms of long term... pauci is usualy one of the least difficult types,

one of the possible bad things that can happen is that i can turn into

polyarticular but the statistics of that and knowing who it happens to is

not all that predictable.

Water therapy, baths , that kind of stuff is great not only for exercise but

also helping to relieve pain and stiffness. I also agree with the following

the lead. Young kids just show how they are.... their behavior shows whats

going on with them and than adults can act accordingly.

You actually got a diagnosis fairly quick even though it seems like a long

time, it can often take a very long time to get a diagnosis so sounds like

the right path is set up and hopefully things will keep going positive.

Whatever the case, its great that you found this place.. the support here is

quite awesome.

Issadora

On Fri, Sep 12, 2008 at 7:02 AM, wilderhealing <wilderhealing@...>wrote:

>

> >

> > Hello all who read this. I am the mother of a 19 month old who was

> > just diagnosed with JRA. One day andria woke up with a stiff

> leg

> > and was walking as if she had a " peg leg. " At first I thought she

> > picked it up out of habit of wearing her daddy's shoes and just

> laughed

> > it off. Well, once I realized that she was doing it all the time

> and

> > her knee began to swell, I knew something was not right. Let me

> tell

> > you it has taken us a while to get to this point (about 2 months to

> be

> > exact). After five emergency room trips, four different sets of X-

> rays,

> > and three different blood tests performed (which = 15 vials of

> blood)

> > we finally received an answer from orthopedic doctor on call at

> the

> > children's hospital we went to on our last ER visit. He said, " You

> need

> > to take your baby to a rheumatologist. " So, we did an found out

> that

> > her ANA factor was positive and she has Pauciarticular juvenile

> > rheumatoid arthritis. I was happy to know that we finally got an

> answer

> > to the mystery of this swollen knee which could no longer be

> > straightened.

> > It has now been a month since her " Formal Diagnosis " and we are

> just

> > getting an appointment for a knee aspiration to be performed and a

> > steroid injection. She is on Naprosyn but it is providing minimal

> help.

> >

> > I guess the reason for me writing this is so that I can get some

> kind

> > of feedback from folks who understand what I am going through and

> what

> > andria is feeling. Am I doing the right thing, subjecting my

> baby

> > to this kind of treatment? What about uveitis? We have been dealing

> > with this for a while...I don't want her vision to be affected

> because

> > longevitiy prior to her finally getting an appointment. Also, what

> can

> > I expect in the future or for the future? I want the truth whether

> it

> > is positive or negative. Sometimes the information the doctor gives

> you

> > is so vague and over my head, it means nothing. I need " real-world "

> > terms so I can provide my baby with the best possible care

> availiable

> > and understand her good days and bad days.

> >

> > Any feedback would be so appreciated.

> >

> Good morning! I'm about a year ahead of you, but still asking most

> of the same questions. My daughter was 3 when she woke up screaming

> at 5am. She couldn't walk, couldn't sit, couldn't lift her arms...

> After doctors and tests, getting better, getting worse again and then

> still better but never 100% she was diagnosed with JIA. For us it is

> clear. The medicine makes a huge difference. The blood work is

> needed to protect her systems from damage from strong medicines. It

> is a balancing act that appears to be constant. Thanks to her

> medicines she has no permanent damage to any of her joints. She is

> playing soccer and feeling like a rockstar this week. Two weeks

> ago " everything hurt " and I was giving her piggyback rides

> everywhere. Yesterday her bloodwork came back with things too high

> and things too low. So we're lowering one of the meds and crossing

> our fingers she won't flare again. In 1 1/2 years she has only had

> one other short stint at feeling " normal " . Please let this one last!!

>

> I guess I'm trying to tell you, by example, that your daughter has an

> unpredictable, constantly shifting disease that will require on-going

> treatment. There will be ups and downs. She could go into remission

> and never have an issue again. This could be a disease she will deal

> with her whole life. She is super young though and will see it as a

> normal aspect of her life. I tell my kids that everyone has

> something they have to deal with in their lives. 's is

> arthritis.

>

> " Real world advice " from me is: you are in a whole new " real

> world " . Listen to your daughter. Follow her lead. Our doctors keep

> telling us that kids this young don't tell you they are tired if they

> aren't. They don't complain of pain if they don't feel pain. You

> will see your daughter do things with a smile when you see she is in

> pain and you will want her to stop. Don't stop her but remind her

> that it's okay to take a break when she needs to. When she comes to

> you unwell take great care of her. Baths are fabulous, as is

> swimming. At her worst my daughter just wants to lay on me. I think

> I'm a human heating pad for her.

>

> As for the eye stuff - get her checked out as soon as you can but

> don't worry. Uveitis is only a possible condition related to the

> JIA. I was scared to death before our first apt. But she was fine

> and probably your daughter will be too. If not, they can treat that

> too. You have enough known issues to deal with try not to add that

> to your list. If she does have it, then worry about it and treat it

> and get her better. I know, easier said than done.

>

> This will get easier, at least I tell myself that every day. And

> remember it is a whole lot harder for you than your daughter. To her

> this is just how life is. You are taking great care of her and

> getting her the treatment she needs so she can continue to lead a

> healthy, happy life with minimal interferance from arthritis. Good

> luck!!!

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

[Guest guest]

>

> You actually got a diagnosis fairly quick even though it seems

> like a long

> time, it can often take a very long time to get a diagnosis so

> sounds like

> the right path is set up and hopefully things will keep going

> positive.Whatever the case, its great that you found this

> place.. the support here is

> quite awesome.

>

Is the reason it takes so long to get a diagnosis due to waiting for things to

get worse? I did finally talk to meag's rheum, and he is basically waiting for

her to have pain 24/7 for 6 weeks. She has bad days and bad weeks, but it

doesn't last that long without some sort of a break. At least according to how

she acts. Although, I'm begining to suspect that she's in a LOT more pain than

I ever suspected. She's made comments this past week, that " It hurts, but not

enough to cry about " She's 4.5 yrs.

Pam

[Guest guest]

I'm not quite sure the reasons it takes so long.

What I do know is that it's a process of elimination so often times

diagnosis isn't clear for many doctors. THere also aren't alot of prediatric

rheumatologist and other doctors get very little info about rheumatic

diseases in children so often times it takes awhile for the diagnosis to

become clear.

Also a lot of the symptoms can be related to other things (differential

diagnoses..... like growing pains, infection, virus, injury). Often times

they have to rule out things like cancer because of the presentation of the

labs and I know like for me, I ended up seeing a nephrologist (kidney

specialist) before I saw a Rheumatologist because I had some abnormal kidney

tests and so it went down that route.

I think some doctors are more hesitant and slow so they wait to see more

pain, inflammation and such to decide what medications to use since they can

have such vast side effects and guess they dont want to so called jump the

gun. Also pain and inflammation is supposed to be around for so long before

a diagnosis can officially given according to the ACR- american college of

rheumatology so even when all signs say JIA, they often have ti 'wait'

awhile until the specified ammt of time has passed to help in ruling out

other possible causes.

That's rather sad huh.. " It hurts, but not enough to cry about " WOW, what a

potent sentence!!!! They have these little faces analog scales... or visual

analogue scale... something like that which is basicaly happy to sad faces

and has a number associated with the faces. I know my ped rheumatologist

used this at her clinic. I wonder if this would help you guage her pain. I'm

sure they have versions of it online. It's so hard to know with kids

especially if they have had pain for a long time at a young age.

I know for instance, I used to get ear infections a real lot and my mom said

i never cried. I would just put down my bottle and not eat so she knew I was

sick and needed to go to the doctor. It seemed that if I expressed any pain,

it had to be quite bad. But than again, what exactly does quite bad mean in

terms of intervention?? I guess that's the real trouble. If she can play and

do things than great, If not, than the things like baths and cold/heat packs

can help. The medicine and such... I have to assume its really hard to

figure it all out.

Based on how i felt as a young child, Im sure she does hurt but as sad as it

sounds, shes probably adapted to a lot of the pain. You really get used to

feeling certain things and dont necessarily realize that its NOT normal to

feel like that. It's only when it goes beyond that normal acceptable level

that you express pain. Thats the best way that I can conceptualize it as a

adult thinking back to how i felt around that age. I must say that the first

time I realized that others did not feel as I did was in kindergarten.

Basicaly us little kids were sitting on the floor for an assembly. I was

REALLY squirrmy because i was uncomfortable. I had a terribnle time focusing

because of this. ANyways, when it was time to go, I struggled to get up when

basicaly EVERYONE else just popped up and ran along! I didnt quite

understand WHY i was struggling and they werent or that I felt pain and they

didnt but I just knew that they couldnt feel as I did for whatever reason.

Dont know if this helps but hope it does.

Issadora (age 31 now.. eww.... polyJRA last they said,

Fibromyalgia/myofascial pain blah blah since age 5).

On Sat, Sep 13, 2008 at 6:28 AM, Pam <miller1031@...>wrote:

>

> >

> > You actually got a diagnosis fairly quick even though it seems

> > like a long

> > time, it can often take a very long time to get a diagnosis so

> > sounds like

> > the right path is set up and hopefully things will keep going

> > positive.Whatever the case, its great that you found this

> > place.. the support here is

> > quite awesome.

> >

> Is the reason it takes so long to get a diagnosis due to waiting for things

> to get worse? I did finally talk to meag's rheum, and he is basically

> waiting for her to have pain 24/7 for 6 weeks. She has bad days and bad

> weeks, but it doesn't last that long without some sort of a break. At least

> according to how she acts. Although, I'm begining to suspect that she's in a

> LOT more pain than I ever suspected. She's made comments this past week,

> that " It hurts, but not enough to cry about " She's 4.5 yrs.

>

> Pam

>

>

[Guest guest]

hi, the reason you have to wait so long for a diagnosis is not because

they are waiting to see if things get worse but to see if they get

better on their own. There are forms of arthritis which are reactive,

they follow a particularly bad virus, after the virus has passed the

inflammation sets in. In these cases, which are quite common, the

inflammation or arthritis go away on their own, but it can take up to

8 weeks or so for this to happen.The treatments, which are very

effective, are also very harsh and they dont want to be giving kids

steroids or worse until they are absolutely sure they need them. We

went through exactly the same thing waiting for a diagnosis and it

takes so long because there is no defintive test for it, ANA positive

girls are more prone to it and other than that they are at a loss as

to why this happens to our kids. 17 months later, on methotrexate and

4 months without a flare its easier to talk about it all rationally

but the first few months were horrendous, but you are not alone and

there is so much hope, you must stay positive as hard as it is right

now. Steroid injections are the first line of treatment and they are

highly effective and the results are instant, you wont believe it till

you see it, but how long they last varies from child to child. That is

theother problem every child is different so there is no way of

predicting how the disease will affect your child you just have to

take one step at a time. It helps to stay informed but dont get bogged

down in worst case scenarios because they may never happen. Lots of

kids grow out of this and advances in carte and medication mean that

it is not as debilitating as it once was. My daughter will be 3 now

leads a completely normal painfree life albeit on medication for now.

Keep your chin up and good luck!

>

> Hello all who read this. I am the mother of a 19 month old who was

> just diagnosed with JRA. One day andria woke up with a stiff leg

> and was walking as if she had a " peg leg. " At first I thought she

> picked it up out of habit of wearing her daddy's shoes and just laughed

> it off. Well, once I realized that she was doing it all the time and

> her knee began to swell, I knew something was not right. Let me tell

> you it has taken us a while to get to this point (about 2 months to be

> exact). After five emergency room trips, four different sets of X-rays,

> and three different blood tests performed (which = 15 vials of blood)

> we finally received an answer from orthopedic doctor on call at the

> children's hospital we went to on our last ER visit. He said, " You need

> to take your baby to a rheumatologist. " So, we did an found out that

> her ANA factor was positive and she has Pauciarticular juvenile

> rheumatoid arthritis. I was happy to know that we finally got an answer

> to the mystery of this swollen knee which could no longer be

> straightened.

> It has now been a month since her " Formal Diagnosis " and we are just

> getting an appointment for a knee aspiration to be performed and a

> steroid injection. She is on Naprosyn but it is providing minimal help.

>

> I guess the reason for me writing this is so that I can get some kind

> of feedback from folks who understand what I am going through and what

> andria is feeling. Am I doing the right thing, subjecting my baby

> to this kind of treatment? What about uveitis? We have been dealing

> with this for a while...I don't want her vision to be affected because

> longevitiy prior to her finally getting an appointment. Also, what can

> I expect in the future or for the future? I want the truth whether it

> is positive or negative. Sometimes the information the doctor gives you

> is so vague and over my head, it means nothing. I need " real-world "

> terms so I can provide my baby with the best possible care availiable

> and understand her good days and bad days.

>

> Any feedback would be so appreciated.

>