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I am a mother of an 8 year old who was diagnosed with Crohn's in Feb. after her scopes.  She has been labeled as constipated for 2 years before she started seeing blood in her stools.  Today we went for our second opinion and got the news that her Crohn's was actaully worse than I had orginally thought and the Dr. recommended Remicade.  Apparently there is a portion of the GI track that causes a skin tag that the 6 MP's will not heal but Remicade will, and my daughter is affected there.  I am so nervous about the possible side effects of this drug but feel that there is no other option.  Just like any Mom I want her to live the most "normal" life possible but I also want to protect her future.  I have read the side effects of Remicade and am VERY concerned about cancer later on in life.  I am so overwhelmed and ready to have a mental break down!

I am looking for any advise from parents out there who have gone through the same thing.  How do you make a decision like that?  Something that will possibly effect the rest of her life, or god forbid shorten it?!?!?!

 Reply posted for countryws.

Hello.  I hear where you're coming from.  My six year old was just diagnosed this June 2011, even though we noticed what we thought were hemorrhoids in December 2010.  My pediatric GI specialist couldn't believe that other doctors did not realize what the skin tags were, even though it is not that typical to see CD in a young child.  As they say CD can affect you "mouth to anus" - my daughter has the mouth sores, ileum, entire colon damaged, and peri-anal (spelling?) disease i.e. moderate to severe CD. 

My doctor also wanted to originally start with remicade.  Since my daughter has responded well to steroids over the last two weeks, we are now going to start with imuran first to see if it helps/works, that way if it doesn't we will then progress to remicade.  I am afraid of how all of these medicines/treatments could impact our kids lives.  At the same time I completely believe in and trust my GI specialist.  Make sure that your GI specialist really knows what they are doing. 

Remember that some of the information out there about remicade and cancer talk about the mixture of remicade with other meds simultaneously.

I am sure we will communicate on here again.  I am still in shock, and know we have a long road ahead of us.  I have tried to get myself to consider the worst, and hope for the best since we can not predict the future.

Good Luck,
Vicky

 Reply posted for countryws.

Thank you all for responding, after another discussion with the Dr., we are now going to try Remicade.  Although at this point my daughter does not act extremely sick, the scopes show differently.  Next Tuesday will be her first infusions and I can only hope and pray that everything goes well.  This Dr. uses the Top Down approach to treating the symptoms, and after reading about this method I am feeling a little better about my decision.  I feel for each and every one of you with children who have CD and when I first found out the test results, did not realize what we would be up against.  It will be a long rough road, but I hope to make the right decisions to make the best of it.

 Reply posted for countryws.

Hi - I also have a newly diagnosed 8 y.o. (March 2011) - both our original consult as well as 2nd opinion recommended the Remicade - however, the 2nd opinion wanted to do the Remicade & 6MP, which I've heard is the main component regarding the lymphoma side effect.  We chose the Remicade as she was considered to be moderate to severe with her Crohns - not an easy decision, but one we knew we had to make.  We made it through 2 treatments and she actually looked better, seemed better, and was gaining weight.  Monday was to be our 3rd infusion and she had a reaction to the meds - they immediately stopped treatment and we are now in a holding pattern waiting for labs results to see if she's already built up antibodies to the drug.

I totally sympathize with you and your situation - these are not easy decisions to make, especially since you are talking about children who will have this disease for the rest of their lives.  Listen to your heart and listen to your child about what she wants to do and you will then make the best decision for your family.  Research other options, but sometimes in the end, there is only medication that can help ease the symptoms of this terrible disease.  Hang in there - we'll pray for you and your family!

 Reply posted for countryws.

My son is 14, has had CD for 2, going on 3, years.  We've tried Asacol, 6mp, courses of antibiotics, and now just finished the initial set of infusions for Remicade.  He's still in pain, still missing school, still not gaining weight.  I want to give it a chance to work but I'm completely frustrated.  I feel like the doctors are just playing Russian Roulette with our children's lives. 

I was concerned that if we didn't find something that worked soon, his growth would be permanently impaired.  That is what led me to make the decision to try Remicade, because I feel like I need to give him the best shot at puberty that he can get.  And Remicade is a one-shot deal: once you've tried it, you can't ever use it again, so I reasoned that this was the best time for it. 

But a couple weeks ago when I heard the new FDA announcement about more reports of Remicade causing lymphoma, I freaked out and left work crying.  I'm completely depressed and terrified that I may have doomed my child by putting him on this drug.  And it's not even working.  Nothing works for him but prednisone and we aren't allowed to keep him on it. 

I wish I could offer you some help, or hope, but I'm in the same boat, I guess. 

 Reply posted for countryws.

My daughter was diagnosed with crohn's when she was 5.  It wasn't until she was 7 that they started her on Remicade.  She was on it for about a year and a half and then her body built up antibodies to the drug.  It became no longer affective for her and at the end it gave her medically induce Lupus.  The doctor took her off of Remicade and started her on Humira.  She has been on this for almost a year now.  I know that it is hard when you read all of the side effects of everything.  The remicade did give her some releif but in her case it wasn't for very long.  I wish you the best of luck with everything.