introduction; any advice on living with systemic day to day??

[Guest guest]

Hello, I wanted to introduce myself after months of lurking here. I apologize

for the long post but I have a hard time summing up the situation in a few

sentences ...

My daughter , age 9, is newly diagnosed (6 months yesterday) with Systemic

JIA/Still's. The onset was severe, with three hospitalizations - two as a

result of pericarditis and one for a bacterial infection. Her blood counts went

awry several times, including liver counts through the roof and plummeting white

cells from time to time. The doctors were on the lookout for MAS but the blood

counts then resolved on their own without additional medication so they said it

wasn't MAS but a " bone marrow recovery process " . was also blood test

screened for leukemia and lymphoma at this time but she did not have a bone

marrow draw because the counts rebounded. Actually the diagnosis of Systemic

JIA came very quickly when she presented with the " classic " symptoms upon

arrival at the children's hospital - high WBCs, high inflammation markers,

slightly elevated liver ezemyes, pericarditis, all over joint pain, several

fever spikes a day to 105. The IV prednisolone brought her under control in the

hospital and then she was sent home on oral prednisone starting at 60mg per day.

She has been on various NSAIDS - Indocin initially but it caused liver issues,

then Aleve but it caused blood count issues, now she is on Ibuprofen daily.

And, she is down to only 5mg of oral prednisone which is the fastest taper our

Rheumy has ever done.

My question to you is: how do we as a family move forward and live day to day

with this disease?? My husband and I also have a 5 year old daughter. It has

been such a scary time for everyone. is doing so well now - she's back to

school and even playing soccer again! We are " holding " at 5mg prednisone and

the ibuprofen, as well as several supplements like Omega3, probiotics, and

enzeymes but she still has the haunting JIA rash that comes and goes almost

every day, mostly in a mild form, sometimes moderate when she also has minor

joint aches and pains. She hasn't had too many fevers lately, except a day or

two as we've lowered the prednisone - her body seems to have adjusted to each

lowered dose thus far. Once in a while she will have a low grade fever for a

few hours or an occasional 102 during the night - these seem to correlate with

her " overdoing it " a bit during the day.

Overall she is doing very, very well, but it's clear the disease process is

still going on and it freaks me out. It's like this smoldering fire and we live

in fear of it blazing up again. I am grateful that we haven't had to add other

medications, especially given 's past liver issues. But it's like we are

sitting around waiting for what's going happen. It's difficult to know if we

should plan summer vacations, for instance. Should we take her on a plane?

Should we drive out of range of a children's hospital? Should we cancel all

plans and stay close to home - and if so for how long, months? years? I know

this could go many different directions from here and I know the truth is we

just need to live day to day. Any advice on how to do that would be just great

.... thanks much!