Re: update Rheumy visit for Caleb

[Guest guest]

Systemic Juvenile Rheumatoid Arthritis and Stills are the same disease--just sa

different name for it. I hope you find a solution soon. Yes, it can be hard to

hear the words but it also helps to know what you are dealing with.

e, mom to " joe " 21 poly/lupus

nurse0300 <nurse0300@...> wrote: We saw Dr

Passo today, we finally have a diagnosis. He said he was a

systemic JIA aka stills disease kid. Ok that is very surreal. In a

way we were prepared for a diagnosis any diagnosis but when you are

finally told you kid has a " disease " it really makes you sit down and

think wow now what, which we will decide all of that in 2 weeks. He

said that he wanted to hold off on steroids until after his eye appt

and he wants to discuss PT at the next visit. I am not sure if holding

off on the steriods will make a difference or not but I know that he

knows best so we will just go along for the ride until we feel we need

to question it. Another thing that he was a littlw concerned about was

Calebs weight gain he gained 2 1/2 pounds in 7 days and I know that

starting steroids that woould make him gain more weight. Better run

gotta get up for work in just a few short hours! Did anyone elses

rheumy call their JIA stills is it the same?

(mom to Caleb 7 systemic JIA/ aka stills)

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

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[Guest guest]

Hi -

I'm sorry to hear of the diagnosis.... but in many ways, it's easier to treat

the devil now that you know what it is. Stills and systemic JRA are the same

disease... named after the doctor/scientist who classified it. However, most

ped cases are referred to as systemic JRA and adults as Stills. And the

treatment varies somewhat depending on age of onset (childhood vs. adult).

Unfortunately, we have a lot of experience (over the past 6.5 years) with the

medications you'll be considering - so please feel free to ask away on anything.

And I think that the news overall is much brighter than it was even five years

ago. There are many systemic kids on the list doing really well and they are

developing new options all of the time. There is much to be hopeful about...

though I know it probably doesn't feel that way at the moment.

I hope things turn around quickly for Caleb....

Best hopes to you-

Colleen (mom to Caitlin, 9, systemic)

nurse0300 <nurse0300@...> wrote:

We saw Dr Passo today, we finally have a diagnosis. He said he was a

systemic JIA aka stills disease kid. Ok that is very surreal. In a

way we were prepared for a diagnosis any diagnosis but when you are

finally told you kid has a " disease " it really makes you sit down and

think wow now what, which we will decide all of that in 2 weeks. He

said that he wanted to hold off on steroids until after his eye appt

and he wants to discuss PT at the next visit. I am not sure if holding

off on the steriods will make a difference or not but I know that he

knows best so we will just go along for the ride until we feel we need

to question it. Another thing that he was a littlw concerned about was

Calebs weight gain he gained 2 1/2 pounds in 7 days and I know that

starting steroids that woould make him gain more weight. Better run

gotta get up for work in just a few short hours! Did anyone elses

rheumy call their JIA stills is it the same?

(mom to Caleb 7 systemic JIA/ aka stills)

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

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[Guest guest]

Well do I remember, as I am sure that we all do, the day we heard the diagnosis.

Yet, when I think of the many on this list who still do not have theirs, it

saddens me. Its a d-a-r-n-e-d if you do darned if you don't scenario..its nice

being able to fight the 'enemy', but a real finality and shock to have to get

used to having an actual diagnosis, and the realization of all that the new

'label' entails.

When do you go back to see Dr. Passo?

Hope that Caleb is doing better.

and Rob 18 JAS

update Rheumy visit for Caleb

> We saw Dr Passo today, we finally have a diagnosis. He

> said he was a

> systemic JIA aka stills disease kid. Ok that is very

> surreal. In a

> way we were prepared for a diagnosis any diagnosis but when you

> are

> finally told you kid has a " disease " it really makes you sit

> down and

> think wow now what, which we will decide all of that in 2

> weeks. He

> said that he wanted to hold off on steroids until after his eye

> appt

> and he wants to discuss PT at the next visit. I am not

> sure if holding

> off on the steriods will make a difference or not but I know

> that he

> knows best so we will just go along for the ride until we feel

> we need

> to question it. Another thing that he was a littlw

> concerned about was

> Calebs weight gain he gained 2 1/2 pounds in 7 days and I know

> that

> starting steroids that woould make him gain more weight.

> Better run

> gotta get up for work in just a few short hours! Did

> anyone elses

> rheumy call their JIA stills is it the same?

> (mom to Caleb 7 systemic JIA/ aka stills)

>

>

[Guest guest]

for the first time since starting seeing hem he is letting us go two weeks

before he sees us again. We were going weekly but we get a week break this

week. yea. but we are to return sooner if any problems.

snooksmama@... wrote:

Well do I remember, as I am sure that we all do, the day we heard the diagnosis.

Yet, when I think of the many on this list who still do not have theirs, it

saddens me. Its a d-a-r-n-e-d if you do darned if you don't scenario..its nice

being able to fight the 'enemy', but a real finality and shock to have to get

used to having an actual diagnosis, and the realization of all that the new

'label' entails.

When do you go back to see Dr. Passo?

Hope that Caleb is doing better.

and Rob 18 JAS

update Rheumy visit for Caleb

> We saw Dr Passo today, we finally have a diagnosis. He

> said he was a

> systemic JIA aka stills disease kid. Ok that is very

> surreal. In a

> way we were prepared for a diagnosis any diagnosis but when you

> are

> finally told you kid has a " disease " it really makes you sit

> down and

> think wow now what, which we will decide all of that in 2

> weeks. He

> said that he wanted to hold off on steroids until after his eye

> appt

> and he wants to discuss PT at the next visit. I am not

> sure if holding

> off on the steriods will make a difference or not but I know

> that he

> knows best so we will just go along for the ride until we feel

> we need

> to question it. Another thing that he was a littlw

> concerned about was

> Calebs weight gain he gained 2 1/2 pounds in 7 days and I know

> that

> starting steroids that woould make him gain more weight.

> Better run

> gotta get up for work in just a few short hours! Did

> anyone elses

> rheumy call their JIA stills is it the same?

> (mom to Caleb 7 systemic JIA/ aka stills)

>

>