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My daughter is 9 and was dx with crohns back in Feb.  She has a lot of perianal disease that clears when she is on flagyl but returns after a couple weeks of being off the med. Her bottom gets very sore, so much so that she holds in her stool for fear of pain.  Her growth is very slow if at all. But, she has a good appetite, she is active, happy, no stomach pain, no diarrhea.  CRP has been creeping up but is only 2.0.  She has only been on imuran and intermittent flagyl.  No steroids yet.  Dr. wants to start remicade. Seems a bit drastic.  Is 2.0 so bad?  Maybe we wait then she gets into trouble we can't fix. I'm worried about the side effects but more so about her MD says once you're on it you stay on it forever or until it doesn't work anymore.  When you're 9, thats a long time! Also worried about "using up the big guns" to early.   thoughts??

 Reply posted for sgaebler.

you may want to take a look at the "Balancing the Risks and Benefits of Treatment in Inflammatory Bowel Diseases"
webcast at http://www.ccfa.org/info/webcasts/?LMI=4.5
 
 I guess that's all we have available right now to get this under control.
There are other Anti-tnf  (humira, cimzia) and other biologics (natalizumab).

How possible is it to get Crohn's into remission with the use of Remicade?
about 60 to 70 percent of patients (including pediatric pt's) treated with remicade experience a reduction in symptoms.

Any common side effects that you know of?
most common are injection site reactions and infusion reactions. both are an immediate allergic type reaction. can be as mild as a little bump to as serious as shortness of breath. easily treated by stopping the drip and giving bennadryl. check out the webcast I mentioned for the more serious, but much more rare, side effects.

 Reply posted for katelynsmom.

My son is almost 10 years old and was diagnosed with Crohn's disease in March 2009. I, his mom, was diagnosed with Crohn's in 2002. It seems as if his disease is progressing fairly fast when compared to my disease (I didn't have many problems for the first 6 years). His SED rate varies from the 30's-90's so we haven't been able to get him off the Prednisone. Once we try to decrease the Prednisone, his SED rate goes up. He's been on Pentasa since March, Imuran since June and Prednisone since August. Now, the GI doc wants to get the "big guns" out - yes, Remicade. It's scary since we don't know the long term effects but I hear that it really works. I guess that's all we have available right now to get this under control. How possible is it to get Crohn's into remission with the use of Remicade? Any common side effects that you know of? Any insight or information anyone has from experience with Remicade would be greatly appreciated. Thanks.

 Reply posted for katelynsmom.

My 11 year old son suffered a sever UC flare up this summer - Remicade was the only thing that worked.  It is a scary med but our choice was surgery or try Remicade.  He had 4 infusions - no side effects!  For the last 9 weeks we are trying to switch from Remicade to 6MP.  It is not going great - we may be back on Remicade soon. 

Our doctor requires Davis to be admitted to the hospital for the 8 hour infusion.  You may want to find out the process and prepare you child for it.

It sounds like a scary drug but I am thankful it is available.  Good luck with your decision - God Bless you all. 

 Reply posted for 22.

Ditto.  We have same exact story on remicade for one year (no symptoms, 20 pounds, 5 inches).  Nothing to add to 22's post--I just want other parents to know there are remicade success stories out there.

 Reply posted for katelynsmom.

our 6 year old is on remicade and she is doing pretty good.  also has the perianal disease, plus more.  she has gained 8 lbs. and i can tell you is a diiferent little girl.   more energy, *** , and appetite.  remicade scares me as well, but thankful she is doing so great on it.  (still adjusting the frequency so there have been a few symptoms) 

 Reply posted for katelynsmom.

If you haven't done so yet, ask the doctor about the studies done on children using Remicade. We were told no conclusive studies have been done yet so our dr. won't recommend it. What symptoms is your dgt. experiencing ?

Hang in there !

 Reply posted for katelynsmom.

My 14y/o chrons son has been on Remicade since August and has gained 14lbs and is finally starting to grow. He also has his energy level back on the basketball court. They will also do blood draws each time before the remicade and his lab results are now all within normal limits. I try not to worry about tomorrow and have to do what's best for him today.  We all need to pray for a cure!!   Good Luck and God Bless!!

 Reply posted for katelynsmom.

My son is 4 but has had issues since 3months.  His CRP has been in the 40's we have not done Remicade yet.  So 2.0 does not seem that high but I am not a doctor...I definatly have concerns w/the developing immunities to the Remicade as well but have also heard many people who do well on it.  Don't know if that helped, hope you had a Great Thanksgivng!

 Reply posted for katelynsmom.

Hi... my son, age 11 (diagnosed last summer) had his first Remicade treatment a week ago.  He has similar symptoms to your daughter (with the addition of stomach pain and diarrhea).  Most of the school he has missed (which is A LOT this year) has been due to pain from the fistula... which, despite being on flagyl, has seen little healing.  He does sitz baths several times a day to also promote draining and healing and if he misses one or two that darn fistula swells up and is much more painful.  After his last bout with diarrhea despite being on prednisone we decided to go ahead and use the "big guns."  Our GI gave us the option of doing Imuran (and continuing the steroids for four months which he said is how long it takes the Imuran to kick in) or Remicade.  His recommendation was Remicade.  I have all the worries and doubts that you mention too, but finally decided we were having little to no success with what we were doing so it was time to be more aggressive.  

I don't suppose all this helps you any  but at least you know your not alone in your worries and thoughts.