Re: Solumedrol IV once a week for Systemic JRA (was ... Hello Sue)

[Guest guest]

Hi Sue,

I hope all works well with your insurance company, so there won't be too

much of a problem trying to get Mackenzie in to be seen by a pediatric

rheumatologist. Maybe the one you find, working primarily with kids and

all, will have a personality that she just warms right up to and feels

comfortable communicating with. That always helps. My son Josh is on the

quiet side but he feels real comfortable with his rheumatologists. Well,

after all these years I guess that's to be expected. He's known them

ever since he was little. They're there being supportive during the

times of crisis, helping him along, and there when he's feeling well to

share in the joy. He really liked the nurse that worked with them, too.

Felt very close to Nurse Kathy. Unfortunately, she recently changed

positions and he'll be meeting a new nurse at our next appt. Hope he

likes her, too.

We don't have personal experience with the IV treatment your daughter

has, except for during 's very first hospitalization. There were a

couple times when it was brought up in conversation but Josh was instead

given oral steroids (prednisone) at a higher dose and he, fortunately,

always responded very quickly and the flares settled down. Our

rheumatologists are based on a different island and said would

need to be hospitalized over there for the treatment, which is somewhat

difficult to arrange. My childrens' pediatrician has hospital privileges

but said 's specialists would have to oversee the process. So, we

never went that route. If he hadn't responded as well to the oral

steroids we would have had to, though.

Over the years, I've heard many people talk about the effects of

emotional stress and how it often makes their arthritis symptoms worse.

With Mackenzie's Dad being away, I can't help but wonder if that may be

contributing in some ways. That was wonderful, that he was able to visit

around birthday time. I'm sure the girls were just thrilled ... at least

until it was time to leave again. This must be a very difficult time for

all of you. I hope things will get easier soon. I hope others will write

to share their experience with Solumedrol.

Take Care,

Georgina

mudslid4952002 wrote:

> Hi ,

>

> You are correct about both Drs in Peoria being regular

> rheumatologists, Mackenzie did see Dr. Couri on a couple of

> occasions also. He is a real nice guy. Mackenzie is real hard on

> the doctors though, or anyone she doesn't know for that matter. She

> won't say two words to them most of the time. Dr. Getz used to say

> he was coming to get his dose of being ignored when he had to see

> her!! Right now I am waiting on a referral approval from my

> insurance company to go out of network because there are no

> pediatric rheumys available. So I guess we'll see what happens

> there. I am glad to hear Aundra has been doing well these last

> couple of weeks, especially for the holidays, I hope she continues

> to do well. My husband has not returned home yet. He is not due

> back until April. That has certainly made this past year a

> difficult one. He did get to come home for 2 weeks in November, he

> arrived right between my two girls' birthdays(one on the 12th, one

> on the 14th). We thought he was going to make it in right on Kenz's

> b-day, but he missed it by one day due to a big sandstorm. It was

> real good timing all around though, because it was right after she

> started feeling so badly and had to start back on the IV's, so

> seeing Daddy was real good for her...until it was time to go

> back... We live in Heyworth which is about 55-60 miles southeast

> of Peoria. Looks like you are further away than I thought

> originally, like about 150 miles.

>

> Happy New Year

> Take Care, Sue