My daughter...

January 12, 2011

Hi guys,

I don't usually post or respond on here much, but I do read all of your post and

follow along with your updates (ups and downs)...I was diagnosed with systolic

heart failure after I had my son in July so I stay pretty busy and tired most of

the time.

My daughter, Cambrie (3), has JRA, CVID, PIDD, gtube fed...and many other

diagnosis, but those being the more concerning...just recently was hospitalized

for about 2 months over Christmas time with severe diarrhea, bleeding,

weightloss, pain, vomitting, dehydration, ect. They put her on TPN along with

other meds and did a colonoscoly and said her colon was fried, bleeding and

ulcerated from the bottom of her colon all the way into her small bowel. The

teams swapped over in the middled of her hospitalization and the new team

decided it was not crohns because she didn't have any granulomas on pathology

but everything else matched perfectly...they just wanted to call it colitis.

Rheum and Immunology argued with them but they stood firm. They eventually sent

her home...but she conintued to get worse to the point she was swollen

everywhere and I couldn't even get her off the couch she hurt so bad. I finally

had enough and sought out a second opinion with a very respectable GI who read

through all of her reports reviewed her scope and pathologies and diagnosed her

with crohns that day and immediately started treatment. She's also supposed to

have surgery in a month or two to re-scope and re-evaluate the condition of her

colon. Basically, the hospital GI's read the pathology report wrong...and from

what the other specialists and the new GI have said, autoimmune kids (esp. ones

who are already on treatment - i.e. remicade, MTX, ect) will not make granulomas

with these diseases...so you can't even factor that into making a diagnosis.

Slightly pissed off that she's gone 3 months miserable and in pain, but relieved

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