My 11 year old daughter has been recently diagnosed with Crohn's. Fortunately, it was caught in the early stages, however, her GI wants to get her started on Remicade right away to close a fistula that was found in her lower intestine during a pelvic MRI examination. To our dismay, my wife and I have read copious amounts of information regarding the side effects pertaining to Remicade. Does anyone have any thoughts or experiences he or she would like to share regarding said medication? Thank you in advance.
Doctor wants daughter on Remicade
- Thread starter the93prof
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Welcome the93prof.
I've asked the moderators to move your post to the parents forum where you will find many other parents who share your concerns and can help answer your questions from a parent's perspective.
My son is on Remicade and it saved his life. I would not hesitate to put him on it again. The effects of undertreated and untreated CD are much greater than the very tiny risks of side effects from the medications used to treat Crohn's on an ongoing basis. They are certainly safer than prednisone which is the main alternative.
AT first everything is very overwhelming and it feels like you are being asked to take huge risks with your child's health. What can be hard to grasp is the danger of not treating the Crohn's. Our children often don't look or act really sick until they are at death's door. But if we could see their insides we would be shocked and take action. Imagine your skin being swollen, open sores some bleeding and deep, places where scar tissue makes the skin tight and inflexible. That's what their intestines are like.
I look forward to seeing your posts on the Parent's board soon.
All the best
I've asked the moderators to move your post to the parents forum where you will find many other parents who share your concerns and can help answer your questions from a parent's perspective.
My son is on Remicade and it saved his life. I would not hesitate to put him on it again. The effects of undertreated and untreated CD are much greater than the very tiny risks of side effects from the medications used to treat Crohn's on an ongoing basis. They are certainly safer than prednisone which is the main alternative.
AT first everything is very overwhelming and it feels like you are being asked to take huge risks with your child's health. What can be hard to grasp is the danger of not treating the Crohn's. Our children often don't look or act really sick until they are at death's door. But if we could see their insides we would be shocked and take action. Imagine your skin being swollen, open sores some bleeding and deep, places where scar tissue makes the skin tight and inflexible. That's what their intestines are like.
I look forward to seeing your posts on the Parent's board soon.
All the best
afidz
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I thought this thread would be better suited in the remicade section as that is mainly what you are asking about, but please, feel free to talk to the parents as well, they have a great support system in there and I know they can help you with support that I am sure you need. Here is the link if you haven't already found it.
http://www.crohnsforum.com/forumdisplay.php?f=49
http://www.crohnsforum.com/forumdisplay.php?f=49
Look as pale, and started getting his appetite back, after 2 weeks when he went for his second dose he had already gained 6 pounds back and his iron level went up! It is absolutely amazing how much better he looks, feels and acts in just 2 weeks with 2 doses. He is also on 6mp with the Remicade. Is your daughter on an immunomodulator drug as well?
No. According to her GI, the Crohn's was caught in its preliminary stages, however her pelvic MRI exposed a (one) fistula that he wants to attack aggressively before it develops an abscess or any other complications develop as a result of said fistula. Her GI also wants to be proactive in terms of her treatment because he doesn't want the onset of her transition toward puberty to be delayed, plus, he wants her to grow to her full adult height.
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If it works, great. But it's based on a mouse/human antibody an I quickly developed an immune response to it. But Humira, which is 100% human antibody, has worked for me for 6 years, although its losing its effectiveness and I'll have to witch to a different type of biologic.
So don't get discouraged if it doesn't work.
So don't get discouraged if it doesn't work.
I think your GI's aggressive approach is very appropriate in this case. Fistulizing disease can be very difficult to get under control and using Remicade to get it under control quickly sounds like a good strategy.
Thank you for your reinforcing comments, Patricia56. Today is the day after my daughter received her first dose of Remicade and although I know it is very early in this extremely long process, she is exhibiting a vigor she hasn't demonstrated in months. Moreover, her appetite has increased exponentially. Again, I realize it's just the day after, but at least for now, things look hopeful.
Remicade can act that fast - when it does it's like night and day difference. When my son started it it took about 3 days but the 3rd day he went from 20+ bloody stools a day to less than 5 and we were able to stop discussing when to do the transfusion. He did not have as dramatic a response to the next two infusions but a steady improvement.
My daughter's GI says that her type of Crohn's is uncommon
in that whereas most people who suffer from this horrible
disease have bouts of diarrhea, she experiences severe
constipation. Adding to the problem, my daughter has developed
a small anal fissure, which makes going to the bathroom for her
pure hell. Her GI has prescribed an ointment for said fissure and
it has helped her in terms of pain relief, however, the last time
she had a bowel movement was this Tuesday and the only reason
she did have one was because a suppository was administered.
The good news is that she had a significant bowel movement, but
the bad news is that it was excruciatingly painful for her, moreover,
there was some blood in her stool. Again, we move forward with
cautious optimism.
in that whereas most people who suffer from this horrible
disease have bouts of diarrhea, she experiences severe
constipation. Adding to the problem, my daughter has developed
a small anal fissure, which makes going to the bathroom for her
pure hell. Her GI has prescribed an ointment for said fissure and
it has helped her in terms of pain relief, however, the last time
she had a bowel movement was this Tuesday and the only reason
she did have one was because a suppository was administered.
The good news is that she had a significant bowel movement, but
the bad news is that it was excruciatingly painful for her, moreover,
there was some blood in her stool. Again, we move forward with
cautious optimism.
the93prof- My son tended toward constipation and only had loose stools during and after antibiotics. It's one reason the pediatrician didn't consider the possibility of Crohn's. Since his diagnosis, I've read many posts about children who never had diarrhea. In fact, I think those posts outnumber those from kids who did have diarrhea before diagnosis. I suspect it isn't as uncommon as we were told.
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