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?