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Should I ask for different meds?

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Ulcerative Colitis
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Posted 3/11/2013 1:37 PM (GMT 0)
I have called the doctor this morning because my 8 year old is still having blood in her poops and is starting to have some discomfort. She has recently weaned off prednisone but now 7 days later some symptoms are back. I will do what I have to to help her but long story short she loves softball and the season just started. When she's on steroids she swells and it make it hard for her to breathe and run. I don't want her to miss out on her one true love of playing ball. We have tried asacol before but that did not seem to help her at all. We currently are on Pentasa 500mg twice a day. Two years ago we were able to achieve remission with Pentasa, azothioprine and remi infusions. After a year of remission the GI doc took her off the Pentasa and Azo and we have been a tailspin since then. Any suggestions on whether or not I should ask for something different then pentasa? Thanks everyone.
Posted 3/11/2013 3:17 PM (GMT 0)
You should ask for rectal meds. It's sad to hear your daughter is having to deal with this at such a young age.

Is she on any probiotics?

q
Posted 3/11/2013 3:26 PM (GMT 0)
quincy,
I started her on VSL#3 for juniors but she hates the taste and mixing it in food or drink. She can take pills so I thought maybe I should look into just getting her the capsule for and not the powder.
Posted 3/11/2013 3:29 PM (GMT 0)
If she can take capsules, that would be a good thing.

I also stress the rectal meds. She can take them at bedtime, so won't interfere with sports or day-to day functioning.

q
Posted 3/11/2013 5:16 PM (GMT 0)
I assume she is off the Remicade too? I am not really in favor of Prednisone, Remicade, or azothioprine, especially in children, but - I wonder what the doctor thought was going to happen when they removed the three things which actually put her into remission. The doctor should have known that a relapse was in the works after removing the things that put her into remission. UC is a chronic disease and if something puts you into remission then getting rid of that will more than likely cause a relapse. I'm sorry I don't have any great advice but I just hate it when the doctors don't tell you the truth and this doctor should have known ahead of time that this was going to happen. It was kind of a no brainer. Rectal meds might help but to be truly effective you may have to use the above all over again and then continue with the rectals but it is also possible you could wind up getting the same results all over again if you discontine the pred, remi, and azo.
Posted 3/11/2013 5:22 PM (GMT 0)
"I also stress the rectal meds. She can take them at bedtime, so won't interfere with sports or day-to day functioning. "

A 8 year old won't do them so the mother might end administer for her.
Posted 3/11/2013 5:59 PM (GMT 0)
Ok, just talked with the nurse and the doctor has suggested 4 500mg Pentasa capsules a day, 75mg of azo and remi on the 22nd if not sooner. Please pray this helps her. Thanks for all the replies.
Posted 3/11/2013 6:04 PM (GMT 0)
Very sorry that your daughter is having trouble. Putting my son on the rectal meds made a big difference in getting him into remission. He has inflammation throughout his entire colon but it seems that the lower inflammation is the most stubborn to treat.

When he was first diagnosed, he was put on Pentasa. He has changed from Pentasa to Asacol (last November) and that seems to work better for him as well. Asacol releases in the colon only so it is more concentrated to medicate the colon.

Hope this helps!
Posted 3/11/2013 6:21 PM (GMT 0)
what can you do ????
Posted 3/12/2013 8:46 PM (GMT 0)
It makes me so sad that these little kids have to endure this crap...

You can use Bentyl (NO Imodium) so that she makes less number of trips to the restroom but this will be short term symptomatic fix, just for playing softball purpose. Although rectal meds would be a very good idea, you know your daughter best on her acceptance factor.

My question is, if I understood correctly, if she achieved remission with the combination, why she went off Pentasa and azathioprine? What was she taking during this period?
Posted 3/13/2013 1:52 PM (GMT 0)
Hey deltaforce,

The took her off the azo and pentasa but we continued the Remi every 8 weeks. In Aug of 2012 she was doing so well the were thinking about putting her on every 12 weeks instead. However, two months later she was flaring again. So hard to watch her sick! I would give my life right now if it would make her better and not have to deal with UC anymore.

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