Re: Nicks Rheumy appt and a Question

[Guest guest]

Helen - We missed you!!! We're so glad you popped back in. That is just such

fantastic news about Nick. I am so glad he had such a great summer. What a

relief it must be for you heading into the school year!

The only thing I can think of regarding your letter is that they are

classifying him now as Systemic Onset Polyarticular. I believe that can

happen. I don't think once you have been classified as Pauci or Poly you can

ever become systemic (if I remember my notes from the conference), but I do

think Systemic children can take on Pauci or Poly tendencies.. Sorry if this

is confusing or offers no additional help!!!

Happy belated birthday to Nick. 7. Wow!

Keep in touch - we miss that British humor of yours around here!

Alia and Caroline, age 2, poly and uveitis

Nicks Rhumey appt and a Question

Hi Gang!!!

Phew, life is just too busy sometimes. We have been on vacation and

then company from England arrived, they are still here but I have a

few minutes to myself so I thought I would check in.

Welcome to all the new list members, Sorry I can not welcome you all

separately, but i am just soo far behind, its not even funny. I've

scanned the list quickly and was so sorry to read that out dear

was in the hospital, I need to go check out her website to read what

went on. I hope alls well by now. And to Val and Robbie, I have to

go back and read your posts, but i hope things are better for Robbie

now and that you are getting everything sorted out.

I hope to be back to my usual posting and replies soon.. im really

looking forward to school going back and life slowing down a bit.

In the meantime I have to share with you about Nicks great rhuemy

appt last week. Nick has had a great summer, its been quite a few

weeks now since has complained of any pain at all!!!! hes still slow

going in the mornings and the fatigue is always present, but on the

whole hes doing fantastic. His doctor was very happy with him, hes

finally grown a little (1/2in) and gained a pound since june!! All

his joints are moving well also. The good news is we can stretch out

his next appt for 2 months....

I was a little confused by a copy of a letter the doctor gave me, it

was to the insurance company as we are still fighting with them to

cover Nicks MTX. In the letter she listed Nicks DX as systemic

onset, polyarticular JRA. I was a little thrown by the polyarticular

part?? Can anyone explain this part to me, I thought you were either

Systemic, poly or pauci....depending on your 1st 6 months. I didnt

know you could be both....Anyone have any insight???

I will talk to the doc next time time we see her, I didnt read the

letter till I was home so I couldnt do it at the time. We also had a

good talk about biologics.. basically she was telling me Nick would

go onto Enbrel next, if needed, and after that remicade. I told her

about all the good results that I was reading about concerning

kineret and she told me she was seeing the same results, but as of

yet has not put anyone on it. She says its daily shots and she has

heard they are painful. Nick doesnt need one right now so i was not

too concerned, but it was good to get an idea what her treatment

plans were beyond the MTX.

So Nicks doing great, lets hope it continues.......

Hugs Helen and (7, systemic)

P.s Oh Yea, I nearly forgot turned 7 last week!!!!!!

[Guest guest]

-Hi Alia...

Awwwwww, its nice to be missed... ive missed everyone too. I was soo

pleased to read Miss C is doing well on the enbrel. I pray that

continues to show such wonderful results for her. I also hope the

decrease in meds doesnt cause a flare either. She needs a little

rest, this has been a very trying year for her ( and for you guys!)

Hugs Helen and (7,systemic)

-- In , " Pranke, Alia " <Alia.Pranke@t...>

wrote:

> Helen - We missed you!!! We're so glad you popped back in. That is

just such

> fantastic news about Nick. I am so glad he had such a great

summer. What a

> relief it must be for you heading into the school year!

>

> The only thing I can think of regarding your letter is that they

are

> classifying him now as Systemic Onset Polyarticular. I believe

that can

> happen. I don't think once you have been classified as Pauci or

Poly you can

> ever become systemic (if I remember my notes from the conference),

but I do

> think Systemic children can take on Pauci or Poly tendencies..

Sorry if this

> is confusing or offers no additional help!!!

>

> Happy belated birthday to Nick. 7. Wow!

>

> Keep in touch - we miss that British humor of yours around here!

>

> Alia and Caroline, age 2, poly and uveitis

>

> Nicks Rhumey appt and a Question

>

>

> Hi Gang!!!

>

> Phew, life is just too busy sometimes. We have been on vacation

and

> then company from England arrived, they are still here but I have

a

> few minutes to myself so I thought I would check in.

>

> Welcome to all the new list members, Sorry I can not welcome you

all

> separately, but i am just soo far behind, its not even funny. I've

> scanned the list quickly and was so sorry to read that out dear

> was in the hospital, I need to go check out her website to read

what

> went on. I hope alls well by now. And to Val and Robbie, I have to

> go back and read your posts, but i hope things are better for

Robbie

> now and that you are getting everything sorted out.

>

> I hope to be back to my usual posting and replies soon.. im really

> looking forward to school going back and life slowing down a bit.

>

> In the meantime I have to share with you about Nicks great rhuemy

> appt last week. Nick has had a great summer, its been quite a few

> weeks now since has complained of any pain at all!!!! hes still

slow

> going in the mornings and the fatigue is always present, but on

the

> whole hes doing fantastic. His doctor was very happy with him, hes

> finally grown a little (1/2in) and gained a pound since june!! All

> his joints are moving well also. The good news is we can stretch

out

> his next appt for 2 months....

>

> I was a little confused by a copy of a letter the doctor gave me,

it

> was to the insurance company as we are still fighting with them to

> cover Nicks MTX. In the letter she listed Nicks DX as systemic

> onset, polyarticular JRA. I was a little thrown by the

polyarticular

> part?? Can anyone explain this part to me, I thought you were

either

> Systemic, poly or pauci....depending on your 1st 6 months. I didnt

> know you could be both....Anyone have any insight???

>

> I will talk to the doc next time time we see her, I didnt read the

> letter till I was home so I couldnt do it at the time. We also had

a

> good talk about biologics.. basically she was telling me Nick

would

> go onto Enbrel next, if needed, and after that remicade. I told

her

> about all the good results that I was reading about concerning

> kineret and she told me she was seeing the same results, but as of

> yet has not put anyone on it. She says its daily shots and she has

> heard they are painful. Nick doesnt need one right now so i was

not

> too concerned, but it was good to get an idea what her treatment

> plans were beyond the MTX.

>

> So Nicks doing great, lets hope it continues.......

>

> Hugs Helen and (7, systemic)

>

> P.s Oh Yea, I nearly forgot turned 7 last week!!!!!!

>

>

>

>

[Guest guest]

Thanks Helen! We will keep you posted!

Alia

Nicks Rhumey appt and a Question

>

>

> Hi Gang!!!

>

> Phew, life is just too busy sometimes. We have been on vacation

and

> then company from England arrived, they are still here but I have

a

> few minutes to myself so I thought I would check in.

>

> Welcome to all the new list members, Sorry I can not welcome you

all

> separately, but i am just soo far behind, its not even funny. I've

> scanned the list quickly and was so sorry to read that out dear

> was in the hospital, I need to go check out her website to read

what

> went on. I hope alls well by now. And to Val and Robbie, I have to

> go back and read your posts, but i hope things are better for

Robbie

> now and that you are getting everything sorted out.

>

> I hope to be back to my usual posting and replies soon.. im really

> looking forward to school going back and life slowing down a bit.

>

> In the meantime I have to share with you about Nicks great rhuemy

> appt last week. Nick has had a great summer, its been quite a few

> weeks now since has complained of any pain at all!!!! hes still

slow

> going in the mornings and the fatigue is always present, but on

the

> whole hes doing fantastic. His doctor was very happy with him, hes

> finally grown a little (1/2in) and gained a pound since june!! All

> his joints are moving well also. The good news is we can stretch

out

> his next appt for 2 months....

>

> I was a little confused by a copy of a letter the doctor gave me,

it

> was to the insurance company as we are still fighting with them to

> cover Nicks MTX. In the letter she listed Nicks DX as systemic

> onset, polyarticular JRA. I was a little thrown by the

polyarticular

> part?? Can anyone explain this part to me, I thought you were

either

> Systemic, poly or pauci....depending on your 1st 6 months. I didnt

> know you could be both....Anyone have any insight???

>

> I will talk to the doc next time time we see her, I didnt read the

> letter till I was home so I couldnt do it at the time. We also had

a

> good talk about biologics.. basically she was telling me Nick

would

> go onto Enbrel next, if needed, and after that remicade. I told

her

> about all the good results that I was reading about concerning

> kineret and she told me she was seeing the same results, but as of

> yet has not put anyone on it. She says its daily shots and she has

> heard they are painful. Nick doesnt need one right now so i was

not

> too concerned, but it was good to get an idea what her treatment

> plans were beyond the MTX.

>

> So Nicks doing great, lets hope it continues.......

>

> Hugs Helen and (7, systemic)

>

> P.s Oh Yea, I nearly forgot turned 7 last week!!!!!!

>

>

>

>