Mother of a 16 year old with crohns

[KellS]

Hello. My son was recently diagnosed with crohns. We just started him on Pentasa. They wanted to put him on remicade or humira but the side effects really scared me! This is all new to us. I'm open to any advice!

 

[Allibrit]

I had bad side effects from Humira, but seem to be okay on 8 weekly infusions of revellex (Remicade) apart from a slight headache on the day. I still get flare ups, but it does help with fistula's

 

[DustyKat]

Hi KellS and :welcome:

Sorry you had to find your way here! upside is it's a great place for info and support .

I would say the docs were taking the step down approach, hit the CD hard straight up rather than the other way around. My son (17) has also been recently diagnosed and will go to Humira if he doesn't have good clinical and objective markers that the Prednisone and Imuran are working when he next sees the GI this month. As Parent's I think every medication scares the hell out of us as they generally have damn scary side effects and the thought of our children needing to take then is unthinkable. I saw the other the side of the coin when my daughter went undiagnosed for 18 months and therefore untreated, the results of that were horrendous and something I never want revisit. It is so hard and in many cases it really boils down to every decision being the lesser of two evils.

There are many people here that have had wonderful life changing results when they moved to the biologics so there can be many positives. We have a Humira and Remicade Club so when you get the chance have a browse through...................

http://www.crohnsforum.com/forumdisplay.php?f=58

http://www.crohnsforum.com/forumdisplay.php?f=59

There is also a section for parents that may have some info in it for you.....................

http://www.crohnsforum.com/forumdisplay.php?f=49

If you have any questions please don't hesitate to ask, we will do our best to answer! Good luck to you and your son, keep us posted and welcome aboard!

Take care,
Dusty

 

[KellS]

I had bad side effects from Humira, but seem to be okay on 8 weekly infusions of revellex (Remicade) apart from a slight headache on the day. I still get flare ups, but it does help with fistula's

Thanks for the information!

 

[KellS]

Dusty,

Thanks for your information! I will keep you updated. We are going for a second opinion. I want to make sure it is crohns. It must be hard having two children with the disease!