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I have an 11 year old daughter who has crohns, the Dr is pushing remicade on us but I must say I am scared to death of that product. Because of the side effect lymphoma cancer I have lost a relative to that cancer and refuse to take the chance of my daughter getting that dieases. do any one know of any other meds that can be used besides Remicade.  

 Reply posted for alanschachter.

Good evening my crohn friends well I finally broke down and tried the Remicade. after trying the diet thing that also did not work. This is my daughter 2 IV treatment this week and I must say that Remicade was a bad choice so far. My daughter went from having 2 bowel movments aday with stomach pains to now up to 5 to 8 bowel movments a day with stomach pains all day some days the pains are so bad that she is in the bed all day. So we will not be going for the 3rd treatment. I wish there was some place I could go to get some answers.  

 Reply posted for labanda.

Hi Iabanda

I am still very scared about remicade, my daughter is on a roller coaster with her Crohns some days are good and some days are bad. the bad days I just want her pain to stop so i think about the remicade. But of cause on good days I don't. She is going in to the hospital to be re-evaluated from there we will start from the begining with the different meds and hope fully we will find one that will work for her.at this point  

 Reply posted for Cassandra3990.

This is some serious stuff. I am too scared . My son has been diagnosed with UC. He has lost 50 lbs. He was diagnosed this Jan. He is now on penisone and has gained 25 back.Our next choice is Remicade.The Dr. plans are to start the induction phase.I am also scared.He tells me to weigh the benefits.their are no other options.As Ramon's mom I'm I making the right choice.He is 20.He looks up to me.This is all new to him.My prayers are with you and your daughter. Please let me know if you have chosen to do this.How she is doing?  My son will start in a couple of weeks.I hope the Dr is right? Because I have nothing to start from.  

 Reply posted for nancyga.

nancyga

My 8 yr old diagnosed w/UC this year...I watched the conference webisode on the home page and I too have more hope there is something exciting for our chidren in the near future...Marcella

 Reply posted for Cassandra3990.

Cassandra - I am so sorry I said "son" and not "daughter".  I don't know where my head is today.  We'll be thinking of HER.  

 Reply posted for Cassandra3990.

I appreciate Nancyga offering you another perspective as well.  There are many people who have done very well on biologics.  You have to balance the risks/benefits of any treatment whether it is diet or medication.  There's a webinar on risk/benefit on this website that includes biologics like Remicade that might help you with your decision.  It is good that you are moving carefully to make the right choice....our children need us to be their advocates.  

 Reply posted for nancyga.

thanks

 Reply posted for Cassandra3990.

We had concerns when our son went on Remicade for Crohns.  He was diagnosed at 15 and we tried many different medications over two years which did not hold him.  He was malnourished and down to 104 pounds.  We were left with trying Remicade or doing TPN treatments at night.  He had had a fistula for two years that would not heal completely.  Our son was a senior in high school at the time he began the Remicade.  It was mainly his choice.  We also had concern regarding the risk of Lymphoma.  I lost my Dad to Lymphoma.  However, this is a completely different form of Lymphoma they are talking about.  Wthin just two weeks of his first Remicade treatment the fistule was completely closed up and healed.  Our son was on Remicade for almost five years and it completely gave him his life back so he could go off to college.  Unfortunately, just recently his body built up antibodies to the medication and he is no longer able to take it.  He recently started on Humira and it is doing the trick for him.  He is now 21.  We are not excited by the fact that he is on these "big gun" medications but he is living a good quality of life.  We had to weigh the risk/benefits.  Our hope is that the ongoing research and new medications on the horizon will help him continue to lead a flare-free life. 

 Hope this gives you another perspective.

 

 Reply posted for Lizzies Mom.

Thanks for responding  

 Reply posted for Cassandra3990.

I am the mom of a 10 y/o and share the same concern as you.  I would try everything else available, diet in combination with other less scary meds before going to the "Big Guns".   Unfortunately, there are some people that do not respond and have no other choice.  Many people are doing very well and feel they have regained their lives with Remicade.   That said, I would try every other option/choice before beginning that treatment.

Lizzies Mom