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Crohn's Disease
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Posted 8/25/2014 10:38 PM (GMT 0)
My son was dx with Crohn's a few weeks ago and confirmed with endoscopy/colonoscopy. He's been on Pentasa for 2 weeks and the GI had him get blood tests done which showed no change in his inflammation level. The nurse in the office said the GI wants us to do a MRE or change the treatment which may mean going to Humira/Remicade.

My questions--is 2 weeks too soon to show changes in the bloodwork and would we go straight up to the top of the meds before trying anything else? Just scared and anxious as the GI said it was a mild case and the nurse already has us at the top of the treatment pyramid.

Any thoughts or insight is appreciated as I'm still coming to grips with the fact of having a son with this disease.

Thanks in advance.
Posted 8/25/2014 11:29 PM (GMT 0)
Welll, most of us wouldn't rely on blood tests alone to evaluate our disease. How is he feeling? Is he putting weight back on?

With pediatric Crohn's, the biggest risk is poor nutrtional uptake and that your son will fail to thrive, miss his developmental milestones, etc. Your son is already experiencing this. It is not uncommmon to treat pediatric Crohn's very aggressively. I think your DR is probably right to be discussing biologics at this point.
Posted 8/26/2014 12:05 AM (GMT 0)
He's feeling much better and has gained over 2 pounds in 2 weeks which for his size is great.
I guess I just don't want him to be on a biologic this soon for the rest of his life. But, we'll take one day at a time and see what the second dr says on Friday. I appreciate the insight.
Posted 8/26/2014 1:14 AM (GMT 0)
You should definitely opt for the MRE, as this should give you more insight, and help make a decision regarding treatment options.

Most GI's don't prescribe Pentasa anymore, is most feel that it is extremely ineffective. This is debatable of course, and you may get some members here that disagree with that.

There are other immunomodulators if you're afraid to make the bug jump to biologics at a young age. The problem may be, that if the disease is under treated, it can do irreparable harm. The top down approach is getting more and more popular.

If I had of opted for this approach for my Daughter, she would very likely be doing much better now. These are tough decisions, and for the parents here, we all know how difficult it can be regarding our children.

Good Luck, I'm sure you'll get alot of good advice here that should help you make the right decision.
Posted 8/26/2014 9:43 PM (GMT 0)
My GI doc told me that current thinking on IBD is to treat aggressively. I messed around with 5ASA meds (Asacol) for about a year until I realized I was allergic (hives, constant swelling, but the allergy was masked when I first went on it because I was also on Prednisone). I wasn't on anything for about 4 months, then had an enormous flare and needed Remicade to pull me out of the drain that I was circling. There's a newly-approved biologic called Entyvio that you might ask about. It is supposed to work directly in the gut rather than systemically, so risks should be less than the ones carried by Remicade. (And I don't at ALL say that to scare you, just as a parent, I'd want to know that I was being shown all my options before deciding which direction to go with my child's care.)

I wish you luck, and I hope your son's symptoms continue to improve and eventually disappear!
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