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13 year old son diagnosed with Crohn's

My 13 year old son was just diagnosed this week with Crohn's this week and his doctor wants to start him on Remicade next week. I am scared to death from what I have read about this drug. Any advice please.
 

DJW

Forum Monitor
Hi. I'm sorry to hear of your sons diagnosis. I was diagnosed around your sons age. It's important to get the inflammation under control. My crohns was out of control because I didn't respond to drugs or diet available at the time. Uncontrolled crohns is terrible!!

Sending you both my support and hope for a quick remission.
 
My son was dx'rd and 15 and since his disease was severe he was put on remicade right away. I was like you and so scared of the side effects. My son responded to the first infusion and all the CD pain and symptoms were gone! From there, we never looked back, it was fabulous to have him back to normal teen activities and life.

2.5 years later we had to drop remicade due to disease progression. As afraid as I may have been about starting remicade and ten times more terrified by the fact that it isn't working and of the knowledge of the damage untreated or under treated CD can cause.
 
Wow, thank you all for sharing your stories! Already makes me feel better knowing and hearing real stories of people going through the same thing. This is all very knew to me and not even knowing what Crohns was until this. I really do not have a clue about what to do or what to expect. I pretty much feel like my whole world has been turned upside down right now.
 
We have a number of parents that have kids with CD. I'm sure plenty of them will be by. I will tag a few:

my little penguin, jmrogers4, mehita, and maya142.

Also check out our parents forum:

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

It is all overwhelming in the beginning and there is a steep learning curve but it does get better and there is great support here.
 
Hi momofboy,

I am so sorry to hear about your son's diagnosis.
My son was diagnosed last year at age 18 and his first drug he ever used was remicade. He has responded well to the meds, but I was devastated that he required such a strong medication. Despite my ambivalence, I look at my son and see a healthy person and this serves as a reminder that this is hopefully the best treatment.

Please feel free to ask any questions.
Best of luck! :)
 

Maya142

Moderator
Staff member
Hi and welcome!
My daughter was diagnosed at 16 with Crohn's. She was already on biologics for her juvenile arthritis and so she went on to Remicade immediately after being diagnosed with Crohn's, so we could treat both conditions with one drug. Putting her on biologics was scary, but it's a decision both of us have never regretted. Remicade was her miracle drug for a while and I got my teenager back. She never had side effects and didn't mind the infusions at all.

I know all of this is a lot to take in, hang in there! Definitely take a look at the parent's forum, there are a number of parents who have sons that are around your son's age.
Good luck with whatever you decide!
 
Welcome, sorry you had to join our club. My son is 14, 15 next month and was diagnosed at 10. We started remicade just this last January and have had the best 6 months since diagnosis. We've tried many of the other drugs but they have either not worked long enough or been strong enough. He barely grew 2" over several years and did not gain any weight after the initial few months. He has grown almost 3" since January and has gained 17 pounds. He still looks a lot younger than his peers but he know has a chance to catch up and really get the whole puberty thing moving. As Clash says have a look around the parents section and please keep us posted on how he is doing.
 
I was diagnosed at 14 and had Remicade at 15. Was the only drug that worked for me. Put me in remission for 9 years. I didn't grow for about 2 years, then after I hit 18 I grew 6 inches. I was on steroids for over a year, I would advise to avoid long term steroid use if you can. It really weakened my bones and I think is part of my joint pain now. I had to find a different dr and wean off the steroids. I would suggest a pediatric gi if you have access to them. I've had Crohns for 17 years now, some good times and some bad.
 
Hi there... I have a 14 year old son, dx'd at age 8. We tried all the meds, starting with the weakest and working our way up. Unfortunately, we had to keep going back to prednisone because the maintenance meds never worked until he started Remicade. He's been on Remi for seven months now and in remission for six of those seven months. It's been wonderful! He says he only thinks about his Crohn's once every eight weeks for the four hours he's getting his infusion... otherwise he forgets he even has it.

There are some recent studies suggesting the top down approach for kids (starting with the biologics like Remi and Humira) if started within three months of dx can work really well at knocking out the disease. With kids, tricky part is getting the disease under control quickly so they can grow, particularly at the 12-15 age time frame when they should be hitting puberty. Many GI's will start freaking out when boys hit age 14 and they're not doing well... so that might be part of your GI's reasoning for jumping to Remicade. They only get one chance at puberty.

I understand your fears about Remicade, but now that I see my son growing and the benefits he's getting from it, it far outweighs my fears. I still worry about long term effects, but he also needs to be healthy enough to enjoy life right now. Remicade is helping him do that.

If you have any more questions, don't hesitate to ask. We're all here for you!
 
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