A Little History (was ... Re: Ibuprofen isn't cutting it...)

[Guest guest]

Hi Becki and Everyone!

Do you know how exciting it is to read updates about ?!? It makes me so

happy to know that he is doing so well. His story gives hope to so many

parents. Josh had to take more of a round-about approach, that 'step-up'

treatment approach that used to be so common. And the newer meds, like the

biologicals and even the supposedly safer NSAIDs, weren't developed yet when

he first got sick. So his cycle of active arthritis, extremely high fevers,

systemic rash, etc. lasted for several years before we really were able to

get a handle on it and quiet it down. Living on this tiny little island,

there was only one other child I knew of who had the same disease. She was

treated by the same doctor, with the same approach, and wasn't doing much

better than Josh.

At the end of 1995 the Make A Wish Foundation contacted us. Josh had just

gotten out of the hospital again and his quality of life was not very good.

But I was uniformed and in denial and I told the Foundation thank you ...

but please use that wish for a child who is REALLY sick. (If only I had

known then what I know now, yah : ) ...) Instead, I talked with Josh about

all of his dreams and where he might like to travel to and what he would

like most and his surprising answer was ... a computer. That was way back in

the day. Some people did have home PCs but it wasn't common like it is today

but if that's what he wanted, I was determined to make it happen for him.

Meanwhile, I knew nothing at all about them. I'd graduated from college

without ever using one. We used to use typewriters with ribbons at the

library and stepping up to the personal electric typewriter I received as a

gift was a big deal : ) The first computer I bought was a second-hand

Macintosh. It ran on actual floppy discs (the paper ones, not plastic). Josh

LOVED it, even though it was a DOS system with only three colors. Gave me

time to save up for a lots more modern computer. Nearly $2000 for a PC with

a 2 gig hard drive, running on 32 mbs of RAM. Imagine? Our cell phones come

much better equipped nowadays but it was top of the line back then. Josh had

wanted a computer and he was absolutely thrilled. But he was only 7 years

old and somebody else had to learn more about taking care of this major

purchase and how to make it last. It really was major for us. It cost nearly

as much money as the little previously-owned Honda I drove at that time!

So, while Josh busied himself with educational software I read every

computer book I could get my hands on, took a few classes, and eventually

felt that we were ready to make the big leap. We made use of the old

fashioned telephone modem and went online. A whole new world was opened up.

I discovered the old-fashioned text-based usenet newsgroups and saw how

people were using them. I found list-serves. I saw people who had arthritis

and who were taking some of the same medications as my son but I wasn't

finding any groups specifically focussed on children with arthritis. I

signed up with e-groups and passed the address around through the

newsgroups, electronic bulletin boards, and the adult Still's Disease group.

Then I started getting emails. Amazing email messages from other parents

whose children had the same condition. At first, it was specifically for

parents of children with Systemic JIA (or JRA, back then). That sub-type is

the least common so we soon expanded beyond the comfort and familiarity of

our little group of eight or so families and began welcoming parents whose

children had other forms of arthritis. Unfortunately, e-groups didn't last.

When they shut down, it was agreed that we still needed the connection, the

support, and the information that we shared. At the beginning of 1999, I

switched the list over to . If you google , which many

do after word-of-mouth recommendations, our group shows as the first search

result. That makes it easy, hopefully, for concerned parents to find this

wonderful group of folks.

I admit, I have taken a back seat lately ... but with the support and

knowledge of our more active participants, this group is as valuable as

ever. It's really wonderful to see how families have gone beyond the

internet connection and have become friends. Our members' children have met

one another at doctor appointments, arthritis conferences, and summer camps.

They've connected through computer chats and by old-fashioned pen pal letter

writing. It's so important to know that you are not alone, that you are not

the only person in the world going through this. So I am thankful for every

single person who has ever reached out, by replying to a question or by

sharing an update on how their child is doing or by letting folks know about

a new rheumatologist or an upcoming local event.

Keep up the great work!

Me? I just got off the phone. Setting up a delivery of Enbrel for this

coming Friday. Josh got a letter on Saturday stating that his doctor's

request for Enbrel was denied by the insurance company so they wanted to get

in another shipment before the prior authorization expires. The letter

states that requested documentation was not received and that we need to

submit sufficient documentation of medical necessity, if reconsideration is

desired. What the heck did this new doctor tell them ... or NOT tell them? I

already wished that Josh would have gone to see him towards the end of

January, after he lowered the dose of Indomethacin and Josh started to

flare. Wish the new doc would have examined him then so he could see how

serious even a slight change in meds effects my son. Josh only spoke to him

on the phone, though. If he doesn't get a new prescription for Enbrel ... I

don't even want to imagine what might happen. He's only had 3 or 4 office

visits with Josh and has always seen him doing very well. According to the

insurance letter, the decision to deny Enbrel was based on information the

doctor provided. I hope we'll be able to substantiate a need for the med

without causing undue harm.

So, wish us luck. We'll be busy!

Aloha,

Georgina

Re: Ibuprofen isn't cutting it...

My daughter has been taking an NSAID since August 2001 I think.

Currently--and for most of the time it has been Celebrex. She also takes

MTX, Ultram and Humira. She failed Enbrel---we got in it on a study in the

early days--and Remicade--and a bunch of other medications. And she takes

some other things too but for her the Celebrex does make a difference in her

day to day pain and ability so she is still taking it about 10 years later.

e, mom to 'joe' 24 poly+