Posted 9/19/2011 3:42 PM (GMT 0)
I am very sorry you're going through this Wagongirl. I have seen quite a few parents here with young children that have used or considered Remicade. While I have been tempted to go that route, I always keep in mind that Remicade seems like mostly a bandaid solution. I have only seen a handful of people who have had amazing results that lasted multiple years with Remicade. It seems like many have good results and then build up antibodies within 2 or 3 years and Remicade no longer works. What you have to think about is, is it worth it to put these drugs into her body when she may only get a year or 2 of benefit from them? The chances of developing lymphoma are very low but it is a risk. Surgery is a good option but it's always very scary to think about such a huge surgery, especially in a young child. The reality is, younger people tend to heal faster and end up having less BMs per day in the long run. Just something to consider. I don't know what you've tried so I can't say what the best option is but, as I said, if I were young, a life without UC looks appealing. Unfortuantely, I have a lot of bills and downtime from working would put me in an even bigger hole, plus have no one to take care of me while I heal. I just don't see it as an option. I am fortunate to be in remission right now. I can never get 100% comfortable, I know a flare could be right around the corner.
One member MustLoveDogs has a 13 year old daughter who is on Remicade. KillColitis is another member with a young daughter who has tried a lot of treatments. Chris'sColon has a very young son who had j-pouch surgery. Look out for them, they will be able to offer great insight.
Best to you and your dauther.