Hi everyone, I am a new member in this forum. My 12 yr old son just got diagnosed for severe/ fistulising Crohn's this past week; we are still in the hospital treating the abscess/ fistula ( what brought us to the hospital) with IV abx and undergoing more tests..we are at the point of making the decision on treatment, which is making our heads spin ..the Dr is recommending Remicade as a first line treatment ...we are really scared and don't know what to do, especially after reading all about the treatment options! Thanks!
First line treatment . Dr recommending Remicade Any thoughts please?
- Thread starter MamaZ
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 26, 2012
- Messages
- 6,369
Biologics have the best track with fistulizing CD. Under treated or uncontrolled CD is often much scarier.
My son had severe disease at dx and was placed on remicade. There was some fear of the medication but after his first dose he had a 180 degree turnaround, no symptoms!
We had to adjust his dose, shorten his schedule and add methotrrxate. Even though he wasn't having symptoms there was an area that persisted with inflammation. Almost 2 years after dx he required surgery for that area.
He was switched to another biologic and continued with the methotrexate yet his CD is still active and now is throughout his small bowel and large bowel.
His disease isn't fistulizing so far although he has had some stricturing(why surgery was required).
My fear of meds is far outweighed by the fear of his disease continuing to do further permanent damage that requires more surgeries.
For most, remicade works quickly and efficiently. It keeps the bowel healthy which lessens the risk of irrevocable damage that can start a young patient on the surgery path. We have many parents here who have kids who have been on biologics for several years and have achieved remission quickly. It truly is a miracle drug for many.
When you look at the risks that come with these meds you have to realize it is very small.
As far as risks, another member my little penguin says it best in the following quote (the risk she is talking about is HSCTL which newer studies have shown is higher with thiopurines, 6mp and humira)
So we take risks just for quality of life every day and those risks are higher than the ones with these meds. It's just those risks aren't brought to our attention like these are.
I'm sure other parents will be along shortly. I hope that whatever decision you reach brings an out a long remission for your child quickly, hugs!
My son had severe disease at dx and was placed on remicade. There was some fear of the medication but after his first dose he had a 180 degree turnaround, no symptoms!
We had to adjust his dose, shorten his schedule and add methotrrxate. Even though he wasn't having symptoms there was an area that persisted with inflammation. Almost 2 years after dx he required surgery for that area.
He was switched to another biologic and continued with the methotrexate yet his CD is still active and now is throughout his small bowel and large bowel.
His disease isn't fistulizing so far although he has had some stricturing(why surgery was required).
My fear of meds is far outweighed by the fear of his disease continuing to do further permanent damage that requires more surgeries.
For most, remicade works quickly and efficiently. It keeps the bowel healthy which lessens the risk of irrevocable damage that can start a young patient on the surgery path. We have many parents here who have kids who have been on biologics for several years and have achieved remission quickly. It truly is a miracle drug for many.
When you look at the risks that come with these meds you have to realize it is very small.
As far as risks, another member my little penguin says it best in the following quote (the risk she is talking about is HSCTL which newer studies have shown is higher with thiopurines, 6mp and humira)
So we take risks just for quality of life every day and those risks are higher than the ones with these meds. It's just those risks aren't brought to our attention like these are.
I'm sure other parents will be along shortly. I hope that whatever decision you reach brings an out a long remission for your child quickly, hugs!
- Joined
- Apr 26, 2012
- Messages
- 6,369
I'm going to tag a few parents for you. Hopefully, some of them will be by.
my little penguin maya142 jmrogers4 Catherine mehita pdx Sascot Tesscorm
Diagnosis is really an overwhelming time. The learning curve is so steep. It does get better. At dx, most are at their worst of lakes because it has raged on without our knowledge but after the meds start these kids do bounce back and most live full, happy lives.
My son is asymptomatic even though the disease is active and progressing. This is both a blessing and a curse. I'm so glad he isn't feeling all the outward effects of a flare yet because he is 19 it's kind of like outta sight outta mind, so taking everything seriously can be an issue.
my little penguin maya142 jmrogers4 Catherine mehita pdx Sascot Tesscorm
Diagnosis is really an overwhelming time. The learning curve is so steep. It does get better. At dx, most are at their worst of lakes because it has raged on without our knowledge but after the meds start these kids do bounce back and most live full, happy lives.
My son is asymptomatic even though the disease is active and progressing. This is both a blessing and a curse. I'm so glad he isn't feeling all the outward effects of a flare yet because he is 19 it's kind of like outta sight outta mind, so taking everything seriously can be an issue.
- Joined
- Jul 2, 2013
- Messages
- 6,752
Hi and welcome! Check out the Parent's of Kids with IBD section. There are several parents with sons about your son's age and there is a lot of info specific to kids there.
My daughter was put on Remicade immediately too. She was also put on Methotrexate. She did not have severe Crohn's but was already on a biologic for severe arthritis, so we just switched to one that would work for both. 8 months later, her scopes showed incredible healing - all the ulcers in her colon were gone and her terminal ileum looked MUCH better.
Before we put our girls on biologics, I agonized and agonized about the risks and side effects. But eventually, the disease became much scarier than the meds. And the benefits were huge and the risks tiny. Neither of my girls ever had side effects with biologics - just some mild fatigue after Remicade infusions, that's it. They have both been on biologics for years and have no increase in infections or anything like that. Both went from very sick kids to normal happy teenagers.
This is a good presentation about the risks and benefits of various meds used in IBD:
http://programs.rmei.com/CCFA139VL/
Good luck!
My daughter was put on Remicade immediately too. She was also put on Methotrexate. She did not have severe Crohn's but was already on a biologic for severe arthritis, so we just switched to one that would work for both. 8 months later, her scopes showed incredible healing - all the ulcers in her colon were gone and her terminal ileum looked MUCH better.
Before we put our girls on biologics, I agonized and agonized about the risks and side effects. But eventually, the disease became much scarier than the meds. And the benefits were huge and the risks tiny. Neither of my girls ever had side effects with biologics - just some mild fatigue after Remicade infusions, that's it. They have both been on biologics for years and have no increase in infections or anything like that. Both went from very sick kids to normal happy teenagers.
This is a good presentation about the risks and benefits of various meds used in IBD:
http://programs.rmei.com/CCFA139VL/
Good luck!
