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17 yr old Daughter - 6MP(warring signs) Remicade bad reaction


Sat, November 12, 2011 9:41 PM

Hello,

My daughter has ulserative colitits. She was dignosed in Jan. 2011 it has never been under control. she has been hospitalized 6 times, Remicade has sever warning signs (hr 133, fever 104, moved to ICU for emergency surgery. They stablized her and transfered her to UCLA. again Predizone, Asacol. they released her and started her on 6MP. Today we took her back to the hospital (waring signs - dark urine). Ultimately she needs the surgery.

In the midst of all the medical, our house caught fire and I've had suregery for umbiclie hernia. I'm being strong but just need to reach out to other parents that can truly "get" how hard this. If there is anyone out there that has the same type of experiance with the treatments being none responsive and have any advice/support I would greatly appreciate it.

FPO dawnxoxo
Joined Nov 12, 2011

Fri, November 18, 2011 1:33 PM

 Reply posted for DawnXoxo.

My son is also 17 with Ulcerative Colitis.  He's currently taking Imuran and Remicade.  He's doing ok and hasn't had the unfortunate issues that your daughter has had, but I wanted to let you know that there are other people out here to listen and encourage.  It can feel like the whole world is crushing in on you.....I've been there.  Stay strong!!!

FPO dta
Joined Feb 26, 2009

Wed, November 16, 2011 9:41 AM

 Reply posted for DawnXoxo.

Dawn,

Sending you hugs and healing thoughts.  Is your daughter willing to try diet modification?  SCD and Paleo can help some with their symptoms.  Keeping a journal helps, too.  This will help identify foods that increase the symptoms and keep track of emotions.  Take care of yourself during this time. 

Wendy

 

FPO breezy
Joined Jan 5, 2009

Tue, November 15, 2011 6:04 PM

 Reply posted for DawnXoxo.

wow, that's way too much stress for any one family.  not familiar w/those meds [my 14 yr old was dx w/crohn's in july 2011].  I hope your daughter feels better soon.  best of luck.

Nancy

FPO nancy789
Joined Jul 23, 2011

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