Today is our first Remi infusion!

[izzi'smom]

We are getting ready to leave for the hospital...wish us luck!

 

[DustyKat]

GOODLUCK!!! I hope all goes wonderfully well hun. Everything, and I mean everything is crossed!...

:goodluck::goodluck::goodluck:

Sending a big squishy hug to Izzi...:hug:
Dusty. xxxxxxxx

 

[Lisa]

Good luck!!!

 

[Jefferson]

Best of luck! Fingers crossed!!

 

[Brian'sMom]

Good Luck!!! Wishing Izzi some; "Feeling REALLY Good" days ahead!!!!!

 

[Dexky]

Hope it went well Angie!!

 

[Crohn's Mom]

Good luck !! I

I sure hope it was smooth sailing !

 

[izzi'smom]

She did great! I'll just have to ask the super-kind nurses to skip the niceties and get the IV in quick next time...the 30 minutes leading up to it was full of tears, but once the needle went in the crying stopped and the fun began! THey had an air hockey table, toys, paints, crafts, and TV...she had a blast! Plus she got to pick out a hat and a pillowcase (made so kindly by a non profit). She starts to wean off Orapred in a week...we'll see then how it's working )

 

[Tesscorm]

Happy to hear it went well ! ika: She's such an adorable little girl, would hate to have heard that she'd had problems! :Flower:

 

[vness1208]

yay! so glad everything went well Good luck & best wishes

 

[Dexky]

She could play air hockey while hooked up to IV?? How cool is that?? I hope it does wonders for her Angie and you never have to even think about it...though I know you will anyway

 

[AZMOM]

Good news!!!!!


I hope you see changes right away!!'

Love J

 

[DustyKat]

Fab news Angie! May it last a lifetime hun...

:mademyday:

Dusty. :heart:

 

[izzi'smom]

Second dose yesterday, and first day off of Orapred...we will see...

 

[DustyKat]

Good luck hun, everything crossed that all continues to go well...:goodluck:

Dusty. :heart:

 

[Dexky]

When is the next scheduled Remi dose? I'm just curious how the loading dose goes for Remi as opposed to Humira. I hope it's all just routine for Izzy and you. Do you have any special plans for her so she'll look forward to the day rather than fear it?

 

[izzi'smom]

We have had doses 8/15, 8/29, and 9/26 is our next (last). Remi is not working for us. Her last steroid dose was 4 weeks ago and her symptoms are worse than ever (fatigue, pain, nightime bms, ...) We meet with her doc after this Remi dose (we'll give it one last shot) to discuss treatment options.
Dexky, she loves it! The nurses are great (friendly, etc) and get the IV in ASAP to reduce her anxiety. They have a large playroom with toys, art, air hockey, TV's, and resting places. She also gets a handmade hat and pillowcase, plus a toy and lollipop (bless those donors <3) It's about 5 hours, plus two to travel, so she's worn out by the time we are through.

 

[SarahAnne]

It's such a shame that it's not working for her, it sounds way more fun than my infusion center! I'm hoping that it kicks in and starts to help her symptoms. It's rough to keep changing meds.

 

[Dexky]

I hope it works too Angie! Keep us updated if there's any change. Bless her heart!! Good luck!

 

[DustyKat]

Oh Angie I'm so sorry to hear this...:hug:

Let us know what the next move is and whatever it is I hope it gives Izzi lasting relief!

Good look hun, thinking about you and Izzi...:heart:

Dusty. xxx

 

[izzi'smom]

SarahAnne...I'm told that children who respond feel better immediately. Unless she has a drastic change following her next infusion, we won't waste any more time on Remi.
Doc had also suggested Humira...not sure if that is what he still would recommend next...time will tell
Poor kid didn't want to go to ballet last night just in case she had to go to the bathroom
We are participating in our local crohns and colitis foundation take steps walk Sat, Oct 1...I am excited to meet more locals and support the search for a cure