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My 9 year old daughter was diagnosed with Crohn's just over a year ago and is on Imuran.  Her most recent blood work showed an increased sedimentation rate and actually the last few blood tests have shown a slight increase each time.  She is growing at each visit but her weight is not going up.  From my perspective she is doing great, active, playing, normal bowel movements and eating well.  She seems better now than ever.  The doctor does not like the sed rate and if it does not change she wants to consider Remicade.  Imuran (and a few months of Prenisone at the beginning) are the only drugs we have tried.  Going to Remicade seems drastic to me.  Do any parents have advice on Remicade?  I think the doctor wants to prevent a flare before it happens.  What has been your experience with Remicade?  The side effects scare me.  Is there really no other choice?  How did your kids do on it?  Was it really expensive?  I would appreciate any and all advice.  Thanks.

 Reply posted for Concerned Mom.

My son was 11 when he was diagnosed with Crohn's. They tried prescriptions, but they did not work for him. When they first told me that they were switching to Remicade treatments, I had the same reaction towards the extensive list of horrifying side effects. I talked to my son's doctors and they assured me they had never had a patient have severe reactions to it (and they were peds specialist in this area). So he took Remicade treatments until he was in remission and he started growing and gaining weight. He is a normal 15 yr old now and he never exhibited any side effects. Hope that helps you. And if he had another episode, I would not hesitate to have him on Remicade again.

 Reply posted for Concerned Mom.

My son Casey, 16 years old, was diagnosed on July 20 with Crohn's.   They immediately gave him a remicade infusion and oral methotrexate.  He had his second remicade on August 4th and he has his 3rd scheduled for September 2nd.  He will then go to 8 weeks between infusions.

When he was admitted to the hospital on July 17th he had oral ulcers, bloody diahrrea, a large peri-anal fistula and intense abdominal pain.  Within three days of the remicade and methotrexate he was feeling better.  It took him two weeks to have normal bowel movements, but they have been normal since then.  He has had two bouts of abdominal pain which were immediately resolved with a dose of bentyl and a prilosec. He has had no oral ulcers, the fistula is healing well, and no other symptoms.

Insurance will pay 100% but I had to get the hospital to bill it with a different code to get them to accept it.  It is very expensive but his Aetna covers it.

I know that the risks of side effects exist but I am very pleased with Casey's healing and progress. He lost 30 pounds in about 6 weeks and has gained 12 back since leaving the hospital. 

He feels tired the day of the infusion but has no other side effects.  His belly pain seems to be coming the day after the methotrexate so I am goign to start giving him the bentyl and prilosec first thing in the morning after his weekly dose of methotrexate which he takes at night.

He tells me he feels himself getting well and is happy with the treatment.

Stephanie

 Reply posted for Concerned Mom.

My 6 year old daughter just had her 2nd remicade treatment (every 8 weeks) moving up to 6 weeks. She was on presdnisone for 9 months and it didnt work for her. Sounds like imuran is working for your daughter. I tried to get Faiths Dr to try that, but he seemed to think remicade was a better choice because it worked faster. Faith was put on remicade and 6-MP a little over 2 months ago. 10 days into the 6-MP she got an infection and was hospitalized for 5 days. I stopped giving it to her then. I think getting infections is the main concern with Remicade. Faith was tired for a couple days after the first infusion. After she got out of the hospital she did great until about 8-9 days before the next Remicade. She went down hill pretty quickly, with pain, bleeding and increased diarrhea. The remicade hasnt stopped her diarrhea but did slow it down and she felt better. We went for the 2nd treatment on the 18th. She seems tired but ok. They told me it takes a few days to start to work. The Dr"s are moving her remicade up to every six weeks because she had that 8-9 days of feeling bad. 

 Faith says "I just go my 2nd remicade and Im doing fine. It just hurts when they put the IV in. Your just a little tired the next few days" My Mom and Dad were a little scared when I first got it, but now we know there is nothing to be scared about. So Im trying to tell you that you shouldnt be scared. 

 Reply posted for Concerned Mom.

Hi,

I believe your doctor thinks that your daughter is not in remission (it sounds like she is not, sed rate and not gaining weight) and that she will get into trouble over time.  But you might have time for her to declare herself...my son was feeling OK but losing a little weight, we waited, things got worse, now he is on remicade (and doing well). Maybe your daughter won't have trouble and you can hold the course, maybe she will worsen (or still not gain weight) and then your decision is clearer.

Why don't you get a second opinion?

My son feels great on remi and has no side effects.  It's a little risky, I'm sure you've seen the black box warning, don't do it lightly or without very good reason (I don't think any of us do it lightly) but it has given my kid his normal life back, and for me that is worth the small risk.  Very expensive ($3000/treatment) but covered by BC/BS, we pay nothing out of pocket.

Good luck.  Not easy, is it?  I wish you the best.

 Reply posted for Concerned Mom.

Hi,

I was reading that you were looking at the Remicade.  Its for sure seems to be new to you and your child, so I felt that I needed to write back to you.  For starters, I had read that last responce, and that was my first thought.  I'm not sure if its recomended for kids?, like it is for adults. I have had Crohns for years now, but the last 5 have been tough going.  I had been on Remicade for 3 years,  and then was on Imuran also.  The Remicade did work well at first, but at least with my case of Crohns, it had stopped working.  I had recentely gotton a Colostomy, and it is going great so far, I'm still in the healing stages.  I found the main thing was to read about it as much a possible.  I never really got the full effects, but I have heared that it has done great things for some people in a great way.  I had sorta the basic side effects, and I'm glad that was all.  I'm glad I tried it, it was worth it to try the main things first.  It was a reality check for me though, I did get the pneumonia in both lungs a couple of winters ago.  I think it was because my immune system was so low, due to being on Imuran at the same time.  But, thats my situation, I do think Remicade can be outstanding, especially if the Crohns has be diagnosed fast enough.  Hope that helps a little, thats the poop on my situation, but again, I had very mild side effects so it was just part of the routine there for a while.  I may actually go to Humira now, I had been imformed that once you stop Remicade you cant go on it again.  Humira seems like it would be allot more user freindly, due to not having to do the 3 hour fusions any more. 

 Reply posted for Concerned Mom.

My 20 year old son has had two infusions of Remicade.  He is to have his third one in two more weeks.  His symptoms have eased up but we were told it will take at least a month to see any change at all.  He has ulcerative colitis.  I am also worried about the side effects but after talking to so many doctors, nurses, and other people on Remicade we decided to take the chance.  It costs $6,000 for one infusion and my insurance at first covered 80% and I had to pay 20%.  But now it is covered 100%.  I have attended a support group for Crohn's and Colitis and there is a person who has Crohn's and is on the  new medicine Humira (which is an injection you give yourself).  Of course these are adults and not young like your child.  So I'm not sure if that is something they would recommend for a child.  But this person absolutely loves it and feels wonderful.  Just keep asking questions and trust your doctor.  This website is also wonderful for finding out information.  Good luck to you.