Welcome to the Forum Jengo. Sorry you had to be here but we are glad to welcome you and hope you find the support you need.
It is so wonderful to hear that your son is doing well on his present medications. It can be very hard to find the right combination to get remission in young children as they often have severe disease.
Our son was 10 when he was diagnosed. We had to go to Humira and 6-MP about a year after his diagnosis to get him into remission. About a year after he started Humira and he had gotten into remission we switched to Methotrexate instead of 6-MP.
My son stayed on Humira for about 3 years altogether and then stopped at his request. He had been in solid remission for more than 2 years. He has continued on MTX since he stopped Humira over 2 years ago.
In the past 3 months he has shown signs of a small flare and we have increased his MTX. We will be repeating his MRE in October to see if this has been enough to knock down the flare of if we will need to look at adding a biologic back in.
It was a very difficult choice to start biologics because of our fears about cancer and long term side effects. But I feel sure that he would not have gotten in to remission otherwise.
And we knew the costs and risks of not getting him into remission. Continuing damage to his intestines, worsening strictures until he had to have surgery, worsening perianal disease. Then there's the lost time in school (half of 4th grade, most of 5th grade), poor physical development of his body - his brain, bones and organs, lost chances to develop socially and emotionally.
Partial remission is OK if that's as good as it gets. But full remission is really what you need if you want their body to heal, to grow, to be ready when the next flare hits. And our son could not get into full remission without a biologic. You can read our story or check my previous posts but we had tried many treatments including two rounds of exclusive enteral nutrition. This was the only thing that worked.
And it has worked very well.
Our son had an MRE in June when he started having signs of flaring. His previous SBFT had shown multiple strictures, the longest about 6 inches. The MRE in June showed NONE - not one single stricture was still there. That is because he got into solid remission and stayed in remission long enough for his gut to truly heal - to achieve mucosal healing. And that's why I believe he didn't immediately flare when he stopped the Humira. Instead he stayed in remission for another two years.
So my advice to you is to stick with what's working for now. Maybe after he's been in solid remission for a couple years you can talk about dropping one of the meds like we did.
But I also think you need do what is best for your family and your child - which may be something different than what was best for our family and our child.
Is your son being treated at a Pediatric IBD Center? I see you are in Mass and there are several top notch programs in your area including CHOP.
I always suggest parents get a 2nd opinion. Doctors who have direct experience treating thousands of kids with IBD have the expertise to answer your questions and to give you as good an assessment of the risks as can be done. CHOP, for example, sees about 4,000 IBD patients a year. If anyone knows what is happening when kids use these meds, they do.
It may not be possible to know how big a risk it is to do just one med compared to a combination of meds. In each case the risks of cancer, for example, are very, very tiny in the adult population where there are much larger numbers of people using these meds. The number of children using the meds is much smaller making it even harder to know for sure whether it is riskier (and how much riskier).
Here's a link to a recent thread that includes a discussion of this issue on the Parent's Forum and it includes a lot of information on HSTCL, the cancer that Thermo referred to in her post.
http://www.crohnsforum.com/showthread.php?t=39337&highlight=hstcl
The most recent data published by the FDA listed 20 cases of HSTCL (the cancer Thermo referred to) associated with remicade. Of those 20 adolescents and young adults, 18 had taken or were also taking azathioprine/mercaptorpurine. To give this number context, it may be helpful for you to know that the estimated number of pediatric IBD cases in the US is as high as 500,000.
You may find this helpful when you are talking to the doctors about their recommendations.
B - what are the Benefits?
R - what are the Risks?
A - what are the Alternatives?
N - what happens if we do Nothing?
D - Decision
Keep asking questions. You are your child's best advocate and you are doing a great job.
