(Was: Beth)

[Guest guest]

:

What struck me about your email was the fact that your son hasn't been on

Enbrel or one of the other biologic drugs yet. If he hasn't (and I wasn't

sure from your post what type of arthritis he has), maybe its time to

talk to the rheumatologist about one of the biologic drugs. Typically,

that is the next step if a child is still in pain despite, as you put it,

" top doses of mtx for over a year " .

Another thing that impressed me about your posting, was remembering when

I worked in a pediatric hospital (I am a registered nurse). I worked

there when I was still in nursing school. Invariably, you would see kids

get more and more active the more pain that they had. We'd see kids fresh

out of surgery who insisted on getting up and moving around, when most

adults in that situation wanted to lie still.

I'd like to hear more about your son's particular diagnosis, and if he'd

tried the biologics yet. Just my 2 cents!

and Rob 17 Spondy

I was actually thinking about pain management for my son and whether

or not it would help. Are there certain indications that this therapy

might help?

Andy (8) has a tendency to go-go-go and then have a complete breakdown

with temper and everything. He only does this at home because he knows

he can't get away with that behavior in public. He gets so out of it

that the only way he can deal with it is to leave him alone and let

him have it out. I know he's in pain, but the way he deals with it is

not good. As parents, we don't encourage this behavior and he does get

punished. He knows what he is doing is wrong, but he just doesn't know

how else to get out his frustration and pain.

I agree that Hannah is getting swept under the rug and that other drug

treatments should be tried. It's obvious there are many other drug

choices out there. And I don't get the feeling Beth is on board with

it. That right there should be a big reason not to do it.

But in my son's case, he's already been on naprosyn and top doses of

mtx for over a year. He's now on plaquenil too. He's also on

compazine, zantac and folic acid. I feel like he's a walking medicine

cabinet, and he has side effects to every medication he's tried.

I hope this never happens, but is there a point when you say after

you've tried so many drugs that don't help, maybe it's best just to

focus on managing the pain? Again, I'd like to say, I don't feel that

is the case at all with Hannah.

If anyone can explain what the purpose of pain management is and how

it is supposed to work, that would help so much.

Beth, I hope Hannah is feeling better soon and that you get this

craziness and pain under control with good meds.

Thanks,