[Fwd: My son Josue]

[Guest guest]

Hi,

Just forwarding this message from a new member. Welcome, .

I'm sure you will find lots of different treatments mentioned here as

well as helpful advice. Even though some meds are more commonly

prescribed to treat JRA what works great for one child sometimes doesn't

work for another. My son has had systemic JRA since he was 6. He's

eleven now. He's been taking basically the same meds all along. His

onset was sudden and severe and we needed to treat aggressively right

from the first hospitalization. The illness wasn't really able to be

brought under control until the past few months. Over time, it has

seemed to get gradually less severe though. His flares are further apart

and don't last as long as they did in the beginning. We saw big

improvements begin to happen a few months after we switched from oral

dosing of MTX to weekly sub-q injections. Which you mention that your

son already takes. His state of health seemed much better and he had

fewer joint problems, higher level of activity ... but he still had

elevated SED rate and CRP and white blood cell count. Just within the

last 3 months the numbers have started improving a lot. Last month his

SED rate was in the normal range for the first time since he got sick.

He saw his pediatrician last week and he said he believed the

improvements might be due to age-related hormonal changes. He doesn't

seem to have any physical signs of entering puberty yet but the doctor

felt this might be playing an important role.

That old stand-by, a warm shower or bath, usually does wonders for my

son to loosen up stiffened joints and help him get moving. Swimming in a

heated pool does, too. If the warmth doesn't seem to be having the

intended effect, maybe you could try icing the joint that's hurting? We

keep a gel ice pack in the freezer for when one of my son's joints is

bothering him. Sometimes it helps reduce the inflammation and soreness

really quickly. 10 minutes on, 10 minutes off and 10 more minutes on.

That's what we do.

Hope this helps a little,

Take care,

Georgina

LUIS CRUZ wrote:

>

> Hi! my name is and I have a son named Josue that is 6 1/2 years old

> that has Stills Disease (Systematic JRA). My son was diagnosed when he was

> 2 1/2 years old. I am glad that I found your e-group because I am

> constantly looking for resources regarding JRA. My son has gone through a

> lot and I am constantly doing research to find out how to make his life a

> little easier. He has gone through many hospital stays and gone through

> many medications. He is currently taking; Methotrexate injections, vioxx,

> cyclosphorine, plaquenil, prednisone, folic acid, ferrous sulfate, zantac,

> claritin, zyrtec, an antihistamine (I don't remember the name), and he gets

> IVIG every other Sunday. Even though he takes all of this he is still in

> pain (especially at night). I am not asking for a miracle drug, I am just

> wondering what has worked for other children. He already tried naproxin,

> enbrel, and Indomethacin - but they did not help him. They are considering

> giving him the Reumatrex IV treatment, but I am not convinced that this will

> help. What are your opinions on this medication? Also, any ideas of what I

> can do when his legs, hands or neck hurt? What have you tried for your

> child. All I have come up with is either a hot bath, a rice bag or putting

> the blow dryer on the joint to give it warmth.