Friday, January 22, 2010

Questions we 1st asked with JRA

Organizing the computer files, I came across this in my "JRA" folder. All the questions we had written out for our 1st pediatric rheumatology appt when Charlotte just turned two, 2 years ago. We appreciated going through each one of these questions thoroughly with our doctor. Want to know the answers to any of them? Toss me a line!

Some of them seem crazy to me now that I know this disease a bit more. Some of the questions, I have stories to (1b - my head is emphatically shaking NOOOO!!!!! What good would it do?! My bff DID have the sibling tested & then she got to worry about it every day). And some make me sad to think back about how scared we were (6) & some I just laugh at myself like "you had NOOOO idea the journey this would take..." (11)

Here they are. The questions we 1st asked our pediatric rheumatologist when our child was diagnosed with Juvenile Rheumatoid Arthritis.

1. Is this an auto-immune disease that was triggered by something such as a virus?
a. Is she susceptible to any other auto-immune diseases?
b. Should her sisters be checked to see if they carry this auto-immune disease?

2. Is JRA something she can grow out of?
a. Is that common? Have you seen it?
b. What are Charlotte’s chances of outgrowing it?

3. Sports – is she limited to what I should allow her to do?
a. Can she play soccer next year?
b. Can she do gymnastics or dance?
c. Are there sports that I should discourage & are there sports I should encourage (swimming)?

4. Do you foresee Charlotte being in a splint?
a. She is just learning how to perfect her walk & her run at age two, and this pain is really causing her to alter herself, how do we get her to walk normal again?
b. Will she be in physical therapy?

5. Over time – is this a disease that eats at her bones?
6. Will this shorten her lifespan?

7. Will JRA affect her growth in any way? Will her body grow normal?
a.Do you also recommend regular visits to the chiropractor?

8.Will she pass this on to her children?

9.Is there a chance that her MONO – will go to other joints?

10.If Charlotte has JRA, is that considered a disability? Is she considered disabled? Is she considered Health Impaired?

11.Should we be concerned about her eyesight? Should we see an eye dr?
a. Children diagnosed before 7 years old with pauciarticular JRA and a positive ANA are at the greatest risk of developing chronic uveitis. Their eyes should be checked every 3 months for several years. Acute or sudden onset of eye inflammation is called iritis. This may occur particularly in the spondyloarthropathies
b. Will we have a team of people looking after Charlotte? For how long?

12. Are there things in her diet that trigger joints to be more loose or more stiff?

13. If steroids are the route you consider, are there alternatives? I have concerns about steroids being used in a young body – 2 years of age is very young to me. How long would you foresee steroids being used?


Natalie said...

I'd be interested in hearing the answer you were given to #7. I know what my daughter's doctor says, but I'm wondering if it's opinion or fact.

Erika said...

Hi Natalie,
Very nice to meet you! I just read through your blog, sounds like Claire & Charlotte have been traveling down very similar roads. I will mark your blog now & read so we can stay in touch! Are you on facebook? There are lots of JIA/Uveitis moms on there too.... (most of them that are earmarked on my right hand side of the blog w/ their blog addresses).

So#7 - will she grow normal & should we go to a chiropractor.

Well our Ped. Rheum said she WILL grow normal and so far, in the 2 years that she has had this (in both knees, an ankle & a wrist), she has. I have no evidence to show otherwise.

But for Charlotte, we were able to target it & treat it pretty fast. She showed sign in september, diagnosed in october, 1st injections (both knees) in November, 2nd injections (ankle & a wrist flare) in December. We started MTX in December, had 3 steroid pulses (for the eyes but i am sure it affects any start of any other flare) in January & then started on Remicade in February or March.

Did the timeline of meds/symptoms help or affect the future? Dont know, but would guess a yes?? partly?? I have no idea...

Ok so tag, you're it. What did your dr. say about the future & growth?

And we have never taken Charlotte to a chiropractor (she has major trust issues with dr's), but we have (just this month) taken her to an acupuncturist who is teaching me massage (vs. needles) that I have started doing each night (and Charlotte enjoys).

Thanks Natalie for finding me & I look forward to talking with you!

Natalie said...

My answer...Claire's rheumatologist does not talk much about growth. As long as Claire's growing she's happy.

Her ped, on the other hand, talks about it often. She says kids with chronic illnesses often have trouble growing. With arthritis, she told us growth can slow or stop during a flare then the child will have a catch up period after. She also said that some medications (like prednisone which Claire was on for much of the first year in varying doses) can affect growth.

This is a big issue for us because Claire is the height of an average 2 year old, the weight on an average one year old - and she is 3!

It makes me sad at times to compare her size to others, and using arthritis as an excuse sometimes makes it a little easier...BUT...I know of no other children with JA who are having trouble growing so I guess it's not so much of a reason as a cover-up.

Yup, I'm on you have a group? You can search for me using natalie greene but with no spaces.

Thanks for replying quickly. All the best to Charlotte and your family :-)