Jack--7 Years Old Remicaid?

[Jengo]

Hi all!!

My son is currently at Children's Hospital in Boston. Here's a quick recap:

1. diagnosed with Crohn's 7-weeks ago and started on prednisone
2. pains went away, fevers went away and energy came back
3. started on 6mp 2 weeks ago
4. sister had cold 10 days ago
5. Jack caught cold and fevers present for 10-days (low grade then 102-104 for past 4 days) and now has diarrhea 2-3 times day (didn't have at all during diagnosis period).
6. Blood tests all look good and waiting on c-diff test to come back.
7. They have him on Flagyl just in case and fever still exists with Diarrhea
8. Cat scan negative for abcess in stomach

That's where we are today. The docs have said that if the cdiff test is negative, they will switch to Remicaid with continuing on the 6mp (lower dose) and then taperiong off the prednisone. He's 62 pounds and 7 years old...anything we need to ask? Anything you've experiecend? Anything, anything, anything?

I can't tell you how comforting it has been to read your posts while in the hospital...my wife and I are going insane.

Positive thoughts to you and your families!

Jen and Eric

 

[xmdmom]

I would try to find out from the attending pediatric gastroenterologist

-what s/he thinks is causing the fever, and diarrhea. what are the possibilities and what s/he thinks is most likely. (Make sure you are communicating with the attending physician. At Boston Children's, there are likely med students, interns, residents and fellows too. Some who are knowledgeable and some who are not.)

-whether s/he thinks the 6 MP is causing too much immunosuppression or related to the fever in some way, or simply ineffective.
(From my understanding, it takes 3 months for the full effect of this med)

-is your son's white blood count is normal?

What are the other options for treatment (other than Remicade)?

What are the risks and benefits of Remicade vs other options for your son?


I hope Jack feels better soon!

 

[Jengo]

Thanks for the ideas. Our dr. Is also here at children's. They think this is a Crohn's flare and that Jack never fully responded to the prednisone. They think he'll respond better to the remicade. We're concerned about the cancer risk. Hoping some parents out there who have dealt with this will have some input for us.

 

[xmdmom]

My son (19 years old) was diagnosed 6 weeks ago and is currently on a prednisone taper and budesonide. We are not sure that this treatment will work as he has had intermittent symptoms recently. We are also concerned about cancer and immunosuppression risk with immunomodulators (eg. 6mp) and/or biologics (remicade).

Did your doctor mention any other options? Are enteral feeds an option? Enteral nutrition is first line therapy for kids in Europe, and other countries (Australia? Canada? I think) and has high remission rates from what I have read.

It's really difficult being a parent in this position. I'm a pediatric specialist who trained in Boston and it's not any easier for me. It's good that you are at an excellent hospital. I hope you can express your concerns to your son's doctor and have a frank discussion about risks and options.