Hi, lurker here,with a question

[Guest guest]

This list is awesome and there are so many smart and strong people

here, which is why I decided to share. <3

My daughter is now 10, with jra dx'd at 3. She has never had consistant

pain, so I've never had to put her on meds for that, although she does

have the " arthritis hand " -slight deformity-for lack of a better word.

We tryed naproxen in the early days of dx, because I was scared of

flare ups progressing the disease worse. When nothing really happened

after a while I took her off of it with no difference either way. I

guess shes in remission for this long? Through the years, I've noticed

one constant: She has only had pain (flare-up?) when her immune system

is challenged into high gear fighting off a sickness, cold, flu, etc.

My ? is this, she is due for immunizations and I don't want to do it.

Even the Dr's will agree that her immune system is dysfunctional and I

feel like these shots are a wild card to her at this point. For her

specifically, the benefits DO NOT outweigh the risks. That's what I

think. Any thoughts?

I realize we are VERY blessed to have jra w/o pain, however I'm always

aware it could be right around the corner.

Thanks,

Amber

[Guest guest]

Hi-

I think the decison over immunizations is a hard one...

Many people I know .... including myself feel that immunizations definately

helped to drive their disease activity especialy because of the immune

dysfunction issues circulating about.....

One thing I can say .. but it seems your doctor does agree.... just FYI....

pain does not have to be present for joint disease/destruction to be

occuring.... that's a big problem a lot of people find..... it's easy to

think.. well No pain.. wheeee.... everything is great... but if labs are

pretty good and so on.. than maybe it's more reactive to infecions.... ???

I just know I have this friend like that too..... she always assumed her

disease had burned out... especialy since it pretty much destroyed her

body.... but come to find out... nope... she still has active disease making

cellular level changes....

I espcialy wonder about this given the presence of the hand deformity or

issue observed....

Just soimething to consider....

Anyways, I don't know what to say about the immunuzations decision except

that I do believe there is validity to your corncern. I have had this stuff

a long time and other immune system weirdness.... I definately have problems

when Im sick more than any other times and I feel there isn't enough

understanding of the Immune system and howthis disease works when it's not

really agrssive per se but somehow the effects are all present if that makes

sense.

I must say, sometimes stuff doesnt flow through in emails because of ones

server, being down or any number of reasons. I actually don't think

messages are moderated at all until after something has occured and needs to

be addressed ... not beforehand....

It is a great group...

Issadora

On Tue, Dec 16, 2008 at 7:35 PM, amberkberry <amberkberry@...> wrote:

> This list is awesome and there are so many smart and strong people

> here, which is why I decided to share. <3

> My daughter is now 10, with jra dx'd at 3. She has never had consistant

> pain, so I've never had to put her on meds for that, although she does

> have the " arthritis hand " -slight deformity-for lack of a better word.

> We tryed naproxen in the early days of dx, because I was scared of

> flare ups progressing the disease worse. When nothing really happened

> after a while I took her off of it with no difference either way. I

> guess shes in remission for this long? Through the years, I've noticed

> one constant: She has only had pain (flare-up?) when her immune system

> is challenged into high gear fighting off a sickness, cold, flu, etc.

> My ? is this, she is due for immunizations and I don't want to do it.

> Even the Dr's will agree that her immune system is dysfunctional and I

> feel like these shots are a wild card to her at this point. For her

> specifically, the benefits DO NOT outweigh the risks. That's what I

> think. Any thoughts?

> I realize we are VERY blessed to have jra w/o pain, however I'm always

> aware it could be right around the corner.

> Thanks,

> Amber

>

>

>

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

We are one of the families who believe that immunizations may play a role in all

of this, despite the vehement protests of most of the medical community.  You

may want to talk openly and candidly with your doc about a couple of things

 

1 - how he feels about altering the immunization schedule and if he's willing to

work with you in cases where your little one needs time to heal...what he feels

your options are

 

2 - if he has any alternative immunization schedules that might be less taxing

on her system.  At this point, she's not at the age where she's getting

bombarded with shots at every visit, but there are alternative vaccination

schedules out there and docs who go along with them...you might need to do a

little research yourself and find them and bring the info to him. 

 

DH and I have always said it makes perfect sense to us that autoimmune diseases

and immunizations would have an intimate link.  We are very careful with what we

choose to give , because we know her immune system does not work the way a

normal person's immune system would.  She is also on Remicade and has been on

steroids in the past, and we've had to put the brakes on many times with docs

who want to do things we don't agree with....like the flu shot.  We've even

asked them directly if the flu shot had thimerisol (a preservative we don't want

her to have...bad stuff!) in it and they told us yes.  If we hadn't asked, they

wouldn't have told us this.  Keep doing what you think is right for your kiddo!

Kathy

Mom to , 4 (poly JRA & ulcerative colitis)

and Luke 6-1/2

 

Mom's running a 1/2 Marathon

Support me at my Team Challenge Page!

http://www.active.com/donate/MI09national/08KBender

 

 

> This list is awesome and there are so many smart and strong people

> here, which is why I decided to share. <3

> My daughter is now 10, with jra dx'd at 3. She has never had consistant

> pain, so I've never had to put her on meds for that, although she does

> have the " arthritis hand " -slight deformity-for lack of a better word.

> We tryed naproxen in the early days of dx, because I was scared of

> flare ups progressing the disease worse. When nothing really happened

> after a while I took her off of it with no difference either way. I

> guess shes in remission for this long? Through the years, I've noticed

> one constant: She has only had pain (flare-up?) when her immune system

> is challenged into high gear fighting off a sickness, cold, flu, etc.

> My ? is this, she is due for immunizations and I don't want to do it.

> Even the Dr's will agree that her immune system is dysfunctional and I

> feel like these shots are a wild card to her at this point. For her

> specifically, the benefits DO NOT outweigh the risks. That's what I

> think. Any thoughts?

> I realize we are VERY blessed to have jra w/o pain, however I'm always

> aware it could be right around the corner.

> Thanks,

> Amber

>

>

>

--

" How exactly does one become a butterfly? You must want to fly so badly that

you are willing to give up being a caterpillar. "

- Trina us

[Guest guest]

Hi Amber,

I wanted to say this. The Childhood shots I did give my daughter. We

found out that she was allergic to the MMR as her reaction to it was a big

concern. She started having JA symptoms at age 3 yrs. So she had her shots

before

the JA started we think. After we found out about the JA at age 12. She did

not have any shots until she was 19 at this time we did it slow as it was the

Hep shots.

Personally even with my son who is older than my daughter. I waited til

they were a year old before giving any childhood shots. Since I breast fed both

kids til they were 17 months old the Dr said it was fine.

Since JA kid's do have a weak Immune system I would be reading a lot

about the issues. The MMR shot does state it can cause Juvenile Arthritis.

My reasoning for the waiting is my 3 sisters had a reaction to the MMR

shot and when they got older in their 20s they had to get it.

Back in my days we were given the Shot which left a scar on our left arm.

This stopped in the late 1970's. Our Rhuemy told me this.If it is a Live

Virus he would not recommend giving a child that shot. A Dead virus is ok. You

can also get exempt from the shots if the Dr feels the child would be in harm

by taking it.

Robbin

**************One site keeps you connected to all your email: AOL Mail,

Gmail, and Mail. Try it now.

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[Guest guest]

Hi Amber -

I have learned a lot throughout this whole process with Grant but

the one thing that I know for certain now is that we know our kids

better than anyone else. So I also feel that we need to do what we

feel is best for our child. I personally wouldn't think that

deciding at age 10 not to have the immunizations would be a bad

thing.

Grant has never had any pain with his arthritis, in fact according

to our rheumy, something like 50% of kids don't have pain with it.

That doesn't mean that it is in remission or doesn't exist. Our

rheumy feels every joint in Grants body at his appt's to feel for

inflammation. Your daughter's " deformed finger " also concerns me

that there is still something going on in her joints. At Grants last

2 appt's. there has been no inflammation found. (YEA!) What worries

me though is, how does our rheumy know that there isn't something

else going on in there and 5 or 10 years down the road is going to

suddenly come out that he has some joint destruction.

>

> This list is awesome and there are so many smart and strong people

> here, which is why I decided to share. <3

> My daughter is now 10, with jra dx'd at 3. She has never had

consistant

> pain, so I've never had to put her on meds for that, although she

does

> have the " arthritis hand " -slight deformity-for lack of a better

word.

> We tryed naproxen in the early days of dx, because I was scared of

> flare ups progressing the disease worse. When nothing really

happened

> after a while I took her off of it with no difference either way.

I

> guess shes in remission for this long? Through the years, I've

noticed

> one constant: She has only had pain (flare-up?) when her immune

system

> is challenged into high gear fighting off a sickness, cold, flu,

etc.

> My ? is this, she is due for immunizations and I don't want to do

it.

> Even the Dr's will agree that her immune system is dysfunctional

and I

> feel like these shots are a wild card to her at this point. For

her

> specifically, the benefits DO NOT outweigh the risks. That's what

I

> think. Any thoughts?

> I realize we are VERY blessed to have jra w/o pain, however I'm

always

> aware it could be right around the corner.

> Thanks,

> Amber

>