Re: & Aundrea (was ... Hello Sue)

[Guest guest]

Hi ,

It's so encouraging to read that Aundrea has been feeling much better

these past two weeks. The sooner the initial symptoms are under control,

the better. Quite a few people find that the severity of flare-ups

decreases somewhat over time. Some find that it's never quite so bad

again, as during the initial onset. Maybe that has something to do with

the children already taking arthritis meds, compared to before treatment

begins, but I do remember reading that the earlier a child goes into a

remission the better the long-term prognosis. I know it's still too

early to know which course or direction this will take but lets hope for

continued improvements and maybe a complete remission. That's a good

approach, to bring Aundrea to the hospital for further examination if

and when the strange rash and other skin symptoms appear again, but it

certainly would be better if it never recurred!

I was sorry to hear that you'd been sick with a virus/flu. I hope you're

feeling better?

Stay well, and keep us updated,

Georgina

sonia dykhuizen wrote:

>

> Hi Sue,

> Dr. Getz is partners with Dr. Joe Couri. Aundrea did see Dr. Getz on 2

> occasions. I thought that they both were very nice doctors. Dr. Couri

> even sent Aundrea a card and she really felt comfortable with him.

I had

> done so much reading on this board that stressed the importance of a

board

> certified pedeatric rheumatologist and to my knowledge both Dr. Getz

> and Dr. Couri are regular rheumatologists. Given the complexity and

> rareness of systemic JRA we felt it was best to pursue a second opinion

> with a ped rheumy. I believe there is a dr. Feguson in Iowa City that

> another

> mom said was very good. We are taking Aundrea to Dr. Klein-Gitelman

> with Chicago Childrens Hospital. She seems good, but we have only met

> her one time. She said Aundrea's rash was very unusual during a

flare and

> if she develops it again they want her hospitalized so that they can

have

> a team of doctors analyze her rash.

> Aundrea has been doing really well for past two weeks. We are also

taking

> her to a Dr. Barone in Shaumburg, Illinois. He is a nucca doctor and

> specializes

> in removing intereference away from the brain stem. Its a special

> chiropractic

> technique with the goal of allowing the body to heal itself. Its

> certainly a whole

> lot more complicated than that but the technique is very gentle and so

> far we

> have seen improvement with Aundrea.

> You mentioned that your husband was called away to serve in February.

> Has he returned home yet? That certainly must have been a stuggle for

> your family. My sister's

> husband serves in the airforce and he was gone for 6 months this year.

> She was so

> grateful for his return. Like you they worked opposite shifts and the

> kids were pretty lonely without him.

> I hope Kenz is having a good week. Where at in Illinois do you live? I

> live in on which is an hour north of the Quad Cities very close to

> Clinton Ia.

> Take Care,

>

> mudslid4952002 <mudslid4952002@...> wrote:

>

> Hi ,

>

> Sounds like you might not be too far from me. Mackenzie is

> currently seeing Dr. Mark Getz in Peoria. Is that who you were

> seeing? If it is, could you give me a little input on how you felt

> your experiences were with him? I am currently in the process of

> seeing if I can get Kenz in to see a doc from Chicago that she saw

> on a consultation about 1 1/2 yrs ago. She has been back on this

> treatment (the Solumedrol IV and Methotrexate) for 8 weeks again and

> it doesn't seem to be doing as well for her as it has in the past.

> Thanks for the welcome!

>

> Sue (mom to Mackenzie, systemic JRA)

>

>

> > Hello everyone - I am new to the group in the sense that I have

> > never posted anything here, I have, however been reading

posts for

> > quite some time now. I find so much helpful information here. I

> am

> > glad I found this group, it was so helpful when I found out what

> was

> > wrong with my daughter. My name is Sue and my daughter's name is

> > Mackenzie, she just turned 6 in November. She was diagnosed with

> > systemic JRA in November of 2000 right around her 3rd birthday.

> She

> > has a brother who will be 16 in May and a sister who is 13. We

> live

> > in Illinois. This past year has been a difficult one for us.

> > Mackenzie's dad, Dave, was called to serve our country in

> February.

> > That has been especially hard on Kenz (what I call her alot

and is

> > alot shorter to type!), since she was/is Daddy's girl. She was

> real

> > used to dad being around for her. He worked second shift and was

> > home with her in the mornings till she went to 1/2 day preschool

> > last year. This year she is in Kindergarten. The question I

have

> > to ask is about Solumedrol. I would just like to know what you

> all

> > know about it. I haven't seen much mentioned on it.

Mackenzie is

> > on 500mg once a week through an IV, they also administer her

> > methotrexate (22.5mg)through the IV too. She is also on

> Plaquenil,

> > Cyclosporin, Indomethachin, Leucovor and Multi-vitamins. I guess

> I

> > would have to say she had a pretty bad flare toward end of

> October.

> > This will be the third time she is on this dose of the Solumedrol

> IV

> > and I was just wondering what experiences anyone else may have

> with

> > it. Like how long should someone be on that high of a dose?

> > Anything anyone knows about it would be great. I just want

to say

> > once again how nice it is knowing there are people out there with

> so

> > much valuable information that they are willing to share with

> > others. Thank you all. Sue and Mackenzie