Newly diagnosed-conserns about Remicade for 15 year old son

Sorry to hear of your son's diagnosis. Has he only had an endoscopy? Did they take any biopsies during the scope? Could you describe any other symptoms he's been having? It would seem unusual that if being labelled as severe, that he's not having some very typical untreated symptoms. I would be asking the GI where the inflammation was, and why he hasn't had a colonoscopy. He should also have a full blood work up, checking for C-reactive protein, Sedimentation rate, Iron stores, wbc/rbc, hemoglobin.

As far as your fears of treatment, and particularly Remicade. These are concerns that everyone single CDer, and Parent has wrestled with. You have to understand that the risks are actually really small. Remicade and some other anti-TNF's have been around for quite some time now. The fears of the negative effects of Crohn's left untreated, are actually much more scary.

The fact that your son hasn't grown, is very typical. You might find that after being on Prednisone, he might start to catch up. My Daughter hadn't grown for quite some time, then after her first round of Prednisone, she grew 6 inches in 6 months.

The good news for you son is, the treatment for Crohn's has improved dramatically. Also, in his lifetime, things will continue to improve. I know this is a stressful time, but with the right treatment plan, you son has a very good chance at a very normal life. Hope things start looking up soon.

He did have both a colonoscopy and biopsy done at the same time. He has ulcers, inflammation and fishers in his trachea, stomach, and both his large and small intestine. She showed us all of the pictures and some of the ulcers she is concerned will perforate the lining. She seemed as surprised as we were at how bad it was, especially in his small intestine. She got all of the reports back from the biopsy which confirmed the diagnosis. We had originally taken him to the doctor because his poop was full of mucus and blood. The doctor referred us to an endocrinologist, not because of that, but because he was concerned with his lack of growth and his quality of life. The endocrinologist referred us to the gastroenterologist because he hadn't gained any weight in years, he actually loss a little weight over the period. He has never complained of stomach pains or anything that seemed out of the ordinary. I know I should be grateful that he isn't experiencing any of the horrible symptoms, but I don't understand how it could be so bad without them.

Hi Connie, sorry to hear about your son's diagnosis. It always breaks my heart to hear of a kid being diagnosed.

If your son was like I was growing up (I wasn't dx until 21 yrs old), I thought my symptoms were normal. I know that sounds odd but when you have nothing else to compare it to and you get used to it being your normal then you don't rate your pain as high. Looking back, I've had crohns symptoms all my life and as a kid I had numerous issues that weren't addressed and it just became life for me.

As for the Remicade, it sounds like what he needs right now. All these drugs we take have their scary side but it's what will hopefully get him to remission. I was on it for a couple of years but then had to stop because of antibodies, then was on Humira that plain old stopped working and now I'm on Entyvio and it's really helping. If he does start Remicade it will be at least a 2 hour appointment as they run it slow, take snacks, drinks and something to keep him(and you) occupied and a blanket for naps.

Hang in there. Sending good thoughts your way.

L.

I am sorry to hear of your son's dx. My son was dx when he was 19 (freshman in college) but he had symptoms for over 2 years that he did not let me or his dad know about. He also has been categorized as severe and although he was not put on prednisone he was immediately put on remicade, azathioprine, pentasa, iron supplements and probiotics. I spent literally weeks researching the side effects of remicade and azathioprine and came armed with pages of questions for the GI. And even when my son became irritated at me I kept researching the treatment and interviewing GIs until I found a good fit. Fast forward two years - my son is now in remission (YAY!!!). He was taken off azathioprine because his incredible GI said there is a slight cancer risk for young males. He was hospitalized for stricture and later had surgery for it. It was a very traumatic 8 months but he is now in a very deep remission and feels amazing. And I have been able to back completely away from his care. It may be a roller coaster for a while but keep asking questions and demanding answers. It does get better. And this forum is a great support. WELCOME!

Sorry to hear of your sons Crohn's. I was diagnosed with Crohns when I was 13 and it was also severe. I was in a flare for almost 3 years on and off and steroids were not working either. Remicade put me into remission right away and have me my life back. It is really in my opinion the best treatment with the least side effects for Crohn's. It has also been around longer than most other biologics. I had no reactions of issues with Remicade but everyone is different.

I did not get many Crohn's symptoms either even when I had severe disease, but untreated Crohn's can cause irreversible damage to the intestines, complications, and even surgery which will be permanent. I wish someone would have been more informative on this when I was younger because I've made some uneducated medical decisions.

I still think it is worth the risk even after I developed lymphoma (This happened on Humira by the way, I had no issues on Remicade) Sometimes with true drug related lymphoma, stopping the medication will actually reverse the cancer. This is sometimes known as PTLD and is mostly observed in transplant patients. Even if it cannot be reversed, lymphoma is highly treatable and even curable. The T-cell lymphoma you speak of is very rare and extremely unlikely. I have heard of some survivors...but really, it is ultimately up to you if you want to take that risk. I hope your son can find remission soon, no matter what the choice! It can be very hard to make decisions about new medications.