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My 14 year-old son is scheduled for Remicade

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Posted 3/1/2012 6:35 PM (GMT 0)
My 14 year-old son is scheduled for Remicade treatments in a few weeks. While I'll be happy to see him grow normally and have a better quality of life in his teen years, I'm mortified at the thought that I may be making a decision that increases his chances of this fatal, non-curable lymphoma. What would most of you do if this was for your son, who is in the risk factor segment?

Post Edited (gdispce) : 3/1/2012 11:41:22 AM (GMT-7)

Posted 3/1/2012 6:47 PM (GMT 0)
Hi gdispce,
I know this is a really tough decision, and it is hard to know what is best. My understanding is that for young males, you don't want to combine 6MP or the other immunosuppressives with the Remicade, but Remicade alone should be ok. My friend's son has UC, and has been taking Remicade since he was 15. He is now 21, and doing very well. I am so sorry you are in a position to have to make this decision, but Crohn's itself can be devastating! Good luck with whatever you decide.
Posted 3/1/2012 8:40 PM (GMT 0)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069033/?tool=pubmed.
Agree with gumby, young males taking immune suppressants AND Remicade.
Although the risk is still pretty small it is not an easy decision to make.

My son is on immune suppressants and I think I would fight tooth and nail against him going on Remicade, although strictly speaking he is now at the age where he decides for himself(18).

I guess that really you need to consider the severity of the illness and what your son's quality of life is like. If he has not been on immune suppressants I would lean towards going on Remicade, but that is just me!

Tough decisions
Posted 3/1/2012 9:11 PM (GMT 0)
I'd give him Remicade.

The chances of getting lymphoma, as I remember it, are effectively neglibly increased - neglible enough the researchers couldn't even be sure the few extra cases of lymphoma in their research study weren't random.

In the meantime, Crohn's is a very real and very annoying presence, with plenty of unpleasant complications. I wouldn't hesitate to give anybody I knew with Crohn's a better chance of getting into remission and maintaining it.
Posted 3/2/2012 7:07 AM (GMT 0)
Hi there,
I am 23 years old, and was diagnosed with Crohns when I was 12. I went trough countless meds over the years, went through tons of pain and ended up having surgery in 2008 to have 10 inches of my small intestine removed. Life was miserable. My doctor started me on remicade about 2 and a half years ago, and my life has been changed for the better more than I ever imagined. I am also concerned about the lymphoma risk, but as my GI explained to me the risks of not treating Crohns are greater and equally as severe at best. If your child has been tried on less serious meds to no avail, then I strongly recommend the remicade route. I would have pushed for it years sooner had I known the difference it was going to make in my life. I'm sorry you are faced with this, and that your son is faced with it. Remicade does not make me sick at all, it helps quickly and it is a convenient 2-3 hour treatment once every 2 months. Good luck!
Posted 3/2/2012 3:11 PM (GMT 0)
I was on Remicade for 4 years and have been on Humira(remicades sister drug) for 4 years and I havent had any complications other than a lowered immune system! =) I hope it works for your son!
Posted 3/7/2012 3:57 PM (GMT 0)
I appreciate all of you taking the time to give me your thoughts and encouragement. It means more than you can know. Although it's obvious, I wasn't thinking too much about the long term effects of waiting too long to make a decision. You've made me realize that if I don't at least try to get his Chrons under control now, with so many years left in his life, he could run into very serious problems later on. He's my only son and he's suffered with allergies to fish, eggs and nuts, and when he was just an infant, up until 5 years old, he had a severe case of eczema. People used to stare at him because he looked diseased. It was all over his body. But, I found some chinese med. on the internet that appeared to have taken it all away, not eve leaving a trace. So, since then, I've always leaned toward a more natural method of controlling things, but this Chrons??? natural remedies are not working as well. Thanks again to all, especially you 'tisidodawg'
Posted 3/7/2012 5:17 PM (GMT 0)
Hey! Sorry your son has to go through this crud!

  Well, first off, PLEASE don't go the all natural way. My mom tried to get me to do that(I'm 15) & I WAS MISERABLE! Now I can't find hardly any medicines that work for me & have been flaring for over a year all because my mom made me do the alternative treatments. I'll tell you, in a nonjudgemental way bc I know you love your son & yous seem like a genuine person. You are not a doctor!! :-) If my mom would've got me more medicinal treatment I wouldn't be feeling miserable. Why not add alternative therapies to his medicines & get the best of both worlds? Don't listen to people & websites that say they changed their diet & now feel great & quit taking meds. I know loads of people who do that & they end up losing their colon.

 I got Lupus from my Remicade but I'm so glad my mom takes risks when it comes to my meds and asks me how I feel about it before starting me on a new medical regime. Remicade has helped so many people get in remission! The chance of cancer is EXTREMELY small. You risk getting in a car wreck, losing some limbs or dieng, every time you get in the car and drive. Life's all about risks.

Posted 3/9/2012 1:41 AM (GMT 0)
Hi gdispce,

I am really sorry that your son is going through this :(

I just wanted to give you my experience. I started taking Remicade when I was 15. That was 13 years ago, and back then I was one of the youngest people they were giving it to. (it was fairly new I believe for Crohn's at that point) Anyway, I took it for 6 years until I developed an allergic reaction to it. But, during those 6 years that I took it, I felt great!

I really feel for you. I cannot imagine being a parent of a child going through this disease. I know how hard it was on my parents when I was younger, and I think even now it is still hard on my mom. It is great that he has such a great mom and support system. That is really important with this disease. My mom was always so supportive and did everything she could to help out.

I hope your little guy does great on it and gets into remission!
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