My son is diagnosed with JRA

Hi Hippiemom,  I'm sure Erin will be along relatively soon--she is certainly the expert on JRA having had it herself (I think).  I'm sorry to hear that your son has it, but I'm also wondering why the doctor did not tell you about the dx?  Isn't that somewhat unethical?  You know, if you just saw the dx on the lab slip, it may just be there for insurance reasons.  Doctors have to have a specific dx to order specific tests, etc...  I know it says RA on all of my lab slips, but my rheumatologist is the first to admit that I don't have RA--most likely IBD and/or SLE.  You might want to call the pediatric rheumatologist and clarify with him that JRA is your son's dx, and the dx was not simply written on the lab slip for insurance reasons.  I would do this before you tell your son anything.

On a positive note, if JRA is in fact what your son has (and I wouldn't doubt it, just think the doctor should have told you), with proper tx, I've read that it can go into remission and he may never have another problem with it.  If it goes untreated, however, I suppose it can lead to future problems, as Erin may attest to.  In any case, I hope your son feels better soon.

Elcamino

It sounds like your son's rheumatologist is not so forthcoming with information.  My lab slips say RA, as I posted earlier, but I may not actually have RA.  But, my rheumy has told me that you do have to have a specific dx for the medicines I've been playing around with.  My insurance would never pay for a tnf-inhibitor for arthralgia, or even UCTD.  I have to have a dx that has been approved for those drugs (IBD, RA, etc...).

I would still call your son's rheumatologist, or if his pediatrician has the report call him and ask about it.  JRA is a serious dx, and someone needs to talk to you about it, and certainly to your son.  I think my rheumy doesn't like to alarm his patients (me), so he will not volunteer information.  I have to specifically ask about it. 

Elcamino

Wow, what a thing to happen.  I know we all feel that it's better us than the ones we love...so I know it is heartbreaking.  But I know from personal experience with kids who have JRA, they are more resilient & handle it better than most adults!

Ok, dependng on the state you live you really should contact the Juvenile Arthritis Family Network ran out of the Arthritis Foundation.  They hold conferences & have help lines for parents, siblings & children with arthritic & rheumatic disease.

If it turns out to be a definitive DX of JRA for your son, there are FANTASTIC summer camps for kids who have JRA!  And also mini-events throughout the year.  No better way for him to learn, connect & make sense of it all.

From the symptoms you gave & the bloodwrok he had done, it certainly does sound like RA to me.

Keep up with the PT, that will help the most with range of motion and strength.  The PT can also be most useful in explaining how he should pace himself throughout the day, start to learn how to pay attention to when  his "breaking" point is with activity.  The importance of rest, etc.... and also can explain medications & how they work.  The PCP can do this too.

Age 8 is a very receptive time in life.  They want to gain independence, so no better time for teaching & learning!

NSAIDs are the 1st line of TX for JRA and corticosteroids when necessary (they are avoided due to growth inhibition like you were worried about).  The 2nd step would to add MTX to the NSAIDs. 

Now's the time to let him take care of his own body!  Encourage him to express his concerns & questions.

Offer remedies that he can do  himself at any time such as:  moist heat application to joints; warm baths; swimming; paraffin dips for hands and feet; ice packs; the importance of mantaining GOOD posture while sitting & walking; get a firm mattress; not to cross legs like a pretzel while sitting or watching TV! LOL; and to wear sunglasses to protect his eyes. Photophobia from iridocyclitis can occur so yearly eye exams are a MUST!

The childs natural instinct to move & play will keep @ bay a lot of damage and complications...so this is a good thing!

I would absolutely ask the MD straight out what is going on in terms of diagnoses.  In fact, those are YOUR medical records!  YOU OWN THEM!  Get all copies of them.

Could be that the rheummy needed to put down JRA as a DX for approval of bloodwork and meds.  It is much different in adolescants regarding diagnoses codes for billing & insurance and such.  But you need to be in the know.

The doc might not have said anything because he/she might be in the stages of ruling things out still...if you do like the doc; do give the benefit of the doubt.  Doctors are a lot more careful and on top of things when it comes to children! 

You're going to be OK! 

With love,

Erin

i hate when that happens!  POOF...gone!

also, feel free to email me. i have it under my name-thingy over there on the left. erin

in terms of respiratory with RA, i know because i have it myself, there's a high incidence of chronic pleuritis, pleurisy, and inflammtaion around the lungs/ribs/and chest wall.  if i talk too long i get so short of breath it seems like i ran a mile...and terific chest wall pain too.

it gets worse on exertion, bending, lifting.

the doc might want to try him on Albuterol or some inhaler...just to give it  a shot.  for me, really didn't help any.  not until i started the TNF meds did the breathing problems settle down a bit.  they still get bad; but not chronic and daily.

for school:  i know they can have installed or placed in every room a chair for him (much better than the crappy ones everyone else gets!); he'll most likely be issued extra sick days or have over the limit days waived; extensions on projects; larger writing pens and pencils; the gym teacher will be notified too.

actually, there should be a child counselor or social worker type person/therapist in each school district that guides parents & students on how to go about getting and doing certain things regarding the school year.  i know i contacted the college's department of disability...WONDERFUL PEOPLE!  made evrything MUCH easier to cope with! 

be strong & take care of yourself too!

sincerely,

erin