Can't get flare under control

Daughter in yet another major flare. She's so sick. Bloody diarrhea. Not eating. Taking all her meds on an empty stomach is not good. She feels woozy and weak. In the past, the prednisone has helped to bring flares under control. She's taken Asacol, Apriso, Imuran, Purinethol, Remicade. Not willing to try Humira since the Remicade almost killed her with a septic hip as well as an allergic reaction. What are our options? She currently takes Entocort for the joint pain and Lialda. I hear that surgery won't help her since it won't help the joint pain. She's lost 12 lbs and being 10 yrs old, that is not good.

I'd hate to suggest this, but maybe surgery is the best option considering her age and the already side effects of the meds. At least something to enquire.

Has she had stool samples done to check for foreign invaders?

Is she on any probiotics?

I think the suggestion of something like Modulen is the best for to take in supplementation rather than nothing.

q

Sometimes I.V. steroids work when oral doesn't, but that means being in the hospital.

BTW, very sorry to hear about your situation. Best of luck to you and your daughter. Hopefully you have some experienced doctors helping you out.

Post Edited (C_G_K) : 9/6/2010 10:24:13 PM (GMT-6)

God it really breaks my heart when I hear of young children having to go through what I just went through again, this time I used 60 mg Prednezone but first get some Gravol into her to stop her from being sick then try to get some food into her after the Gravol settles her little stomach then Prednezone I can't recommend the amount. I am a lot older and bigger but enough to work and not upset her stomach and keep the Gravol going, I think you can use it every 4 hours, don't wait until she gets sick again, keep that under control and get as much liquid as she can handle to keep her from dehydrating. I use Pentasa tablets 3 500 mg three times/day
but that will be too much for her, try 1 three times a day and with Dr. consent try 2 along with Pentasa enemas. It will be very hard for her to hold in, again get Dr. to give strength, they start at 1g/100ml I use 4 gr/100 ml. You or your wife will have to administer. Keep her on her left side and stay there, she will have a bad urge to have a BM right after but get her to hold it the urge will pass but come and go. The longer she can hold it in the higher up it will go to heal her. You have to treat her from both ends now. My Prayers are with her as she will remain in my thoughts till I hear some positive news, Please keep us in the loop, all the meds you named I only hear from U.S.A. so I know nothing of them just what I use in Canada. The Meds you use for joint pain could be causing her flare to begin with, my Dr. changed mine since OHIP would not cover the amount of Celebrex I needed to control my hip pain, my UC specialist took me off the crap my Dr. gave me and wrote the perscription another way so it was covered and using everything combined the D stopped in 4 days mind you the blood took 3 weeks. All my best to your Daughter, you didn't mention her name but I will be watching for updates.
Richard

thanks for all the comments. daughter still in flare, though she's gained 4 lbs back. She has a lot of bubbles in her tummy and feels the urge to vomit at the same time as having diarrhea. going to have stool sample sent in. am looking into the entacort (to control her joint pain) possibly contributing to the flare.

10 yr old female
2 entocort EC daily
3 Lialda daily
Prednisone
probiotics (VSL3)
fish oil
multi-vitamin
Total Well Being by NOW Foods