update on ryan

[Guest guest]

Hello all

I wanted to say thanks for all the information I get reading the

mail, and for the answers to the Questions that I ask.

A up date on ryan (6 years old systemic) we went to the rheumy today

the rash and fevers seem to be getting under control. So now they

added methotraxate ?spelling to try to get the swelling and other

stuff under control. The Dr seems to think we will be able to get

this all under control. Wish us luck.

Is anyone going to the conference in Kansas City? I think it is the

first part of August.

[Guest guest]

Hi Lori (and 's Dad),

Just wanted to say hi and to let you know how happy I was to read of the

recent improvements your son 's been having. As you can probably

tell already just from reading the group's messages, there often are

periods of better health interspersed with flares. There will be good

times and bad. JRA is, after all, a chronic long-term illness. But I

know how wonderful it is to see even tiny improvements and these we have

to celebrate too, as well as reaching the larger goals.

My son has the systemic form of JRA too, since he was 6 years old, and

the rash and fevers for us were very difficult to control. He had them

for the first few years very regularly, even though he was taking

prednisone and methotrexate and a DMARD. Actually, even now ~6 years

down the road~ that tell-tale rash is usually the first outward,

physical sign that something is going on.

MTX has become a pretty standard med for treating JRA. The list of

POSSIBLE side effects may concern you but rest assured, the majority of

children do tolerate it pretty well and it often works wonders in

controlling the symptoms of the illness and in modifying the course of

the disease to help prevent destruction of the joints. Take note of any

side effects he may have and inform the doctor. They'll want regular

blood tests, to monitor things like liver function and white blood cell

count. Will probably advise giving a folic acid supplement, too.

I hope it works out well. Many of us understand exactly what you're

going through, so be sure to keep in touch and let us know if you have

any concerns.

Take care,

Georgina

PS ... I keep hoping that one day they'll have a JRA Conference here in

Maui

jwood_fire@... wrote:

>

> Hello all

> I wanted to say thanks for all the information I get reading the

> mail, and for the answers to the Questions that I ask.

> A up date on ryan (6 years old systemic) we went to the rheumy today

> the rash and fevers seem to be getting under control. So now they

> added methotraxate ?spelling to try to get the swelling and other

> stuff under control. The Dr seems to think we will be able to get

> this all under control. Wish us luck.

>

> Is anyone going to the conference in Kansas City? I think it is the

> first part of August.