I don't even know where to start. I know what the doctor said at our last visit about her suspicions on Kaleigh's condition. I really did have myself convinced that after two weeks on the steroids, her colon would at least look like it was healing, especially since the bleeding stopped a week ago.
I couldn't have been more wrong. I can't believe that a child as sick as she is, could be walking around, seemingly healthy. The images from the inside of her large intestine and stomach are worse than they were when we got her diagnosis in March '09. She was very visibly sick then, and in severe pain. I just can't wrap my brain around it.
The doctor said he thinks it's possible that she has both Crohn's and Ulcerative Colitis. We have to get some labs drawn when we go back for her follow-up. They have a genetic test that can be done in a lab in California, that can give us a more definite diagnosis.
After she got back to the room from surgery, she had to go for a chest x-ray and have a TB skin test. That is in preparation for her first treatment. I guess we really don't have a decision to make about the Remicade. If it's Crohn's, there is no cure. Removing the colon won't elminate the disease. She can't continue on in the condition she is in right now.
Here is just a small portion of the information sheet about this medication:
Since Remicade affects the immune system, serious side effect may occur: 1. Serious infections (such as TB, blood infections, and pneumonia) 2. Lymphoma, or any other cancers in children and adolescents 3. Heart failure 4. Liver injury 5. Blood problems 6. Nervous system disorders 7. Allergic reactions 8. Lupus-like symptoms
You should stay away from people with colds, flu, or other infections while being treated with this medication.
Our only other option is steroids, which these doctors don't like to prescribe at all. And the way it looks right now, they aren't helping her anyway.
Kaleigh's roommate came in from her scopes just before Kaleigh was taken down to the O.R. She looked like she was 9 or 10, and her mother and grandparents were with her. They were heartbroken because they had just gotten a very bad report about her Crohn's as well. This little girl's father couldn't be with them because he is fighting his own battle with Crohn's Disease, and not doing well at all. I didn't get their names, but they are from Greenville, TN. She was first diagnosed at one year old.
I guess tonight we're just stunned. I knew this was a possibility, but I had hope that these meds were working for her.