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I thought I would give an update on my son.... He had his stelara infusion Jan 20th of 360 mg and his first shot was on March 17 (8 weeks later) of 90mg. He has had no side effects and all of his labs taken 3/17 are now normal except hematocrit and iron markers but they are going up and he is...

Thanks, we will check mid week if he still has a cold. Went to campus health and no strep, fever or flu which is good news! Thanks again!

Thanks, he went to campus health and no strep thankfully because the last thing he needs is to go on antibiotics after just getting over c-diff! He doesn't have the flu or a fever either. His infusion is scheduled for a week from tomorrow so I will call next week if he is not much better. He...

Hi Everyone, My son was no longer being controlled with methorexate and disease has expanded from terminal ileum for the past 5 years to throughout his colon and rectum per his scope on Dec 21. He has been on 40 mg of prednisone for 3.5 weeks that is getting things under control and also had...

Thought I would give an update. My son had his scope on Dec 21....it wasn't good as suspected. His disease is now throughout his colon and rectum and no longer just in the end of his terminal ileum. The prednisone is helping. He has been on it for 3.5 weeks and is back at college but it is...

Hi Maya 142, He said Stelara is not a new med (just new for Crohns) and has been used for psoriatic athritis for a long time and he has had good success with coverage. We will see...in the meantime, we learned he has c-diff and has been on vancomycin for 8 days. There was no change in his D...

Update after seeing Doctor : We had a great experience on Tuesday meeting his adult IBD doctor and Fellow. They may need to put in on prednisone but are hoping his flare will hold enough until they do scopes on the 21st. They also are looking to make sure he doesn't have a GI infection. His...

Thanks for letting me know about the letter. My son was on growth hormone injections via pen for 2.5 years daily and they were painful shots. I also dealt with the whole med deliver stuff then. We only live 45 minutes from the campus so I may have it delivered here and then plan to bring it...

Tess - I don't have the link to the FDA report because they send you all paper that you have to go through. When I get the breakdown I am paying for, it should be in disc form and I will post what I learn. The report was for all adverse events reported to them from Americans on Remicade and...

By the way Jacqui, we were just in Boise 3 weeks ago for a wedding. We lived in Moscow for 8 years and went to a former baby-sitter's wedding there. We love Idaho...we also love Denver where we live now. You will be glad you have him under control when you send him off to college, it was not...

Thanks so much to both of you for your input. I know it is such a hard decision and would be easier to make if didn't feel normal although I do know what you mean by the fact that their idea of normal may not be accurate! We will either start Humira or possibly Entyvio since he is now 18 and...

My son was diagnosed with Crohn's disease at age 13. He is now 18 and a freshman in college. Was put on methotrexate 3 years ago and has been on Entocort a couple of times. Was originally on Pentasa but was taken off due to poor compliance. Fecal Calprotectin and CRP's have been high for a...

Is this a side effect of Entocort? My son originally had this around his eyes and now it is gone there and on his cheeks. He feels fine otherwise so I am hoping this isn't a reason for him to stop but I did also email his doctor. Thanks.

My son is starting Entocort. He was on it years ago and it did a nice job. He feels fine but his FCP has been around 1,000 for 6 months so we decided with his GI to see if we can get it down to control things better. He only has crohns in his terminal ileum. He is much better at remembering...

His proximal disease is limited to the terminal ileum and recent small bowel follow through showed no fistulas or strictures but some mild abmormalities that are likely ulcers. Just did perianal ultrasound (normal), abscess healed with drainage in November. No more pain or drainage since so no...

My son always had normal blood markers as well. The ONE and ONLY thing that helps us track his inflammation is Fecal Calprotectin. It is actually amazing how well this tracks when he will start a flare. He has no symptoms except perianal abscess so this has been so helpful for us. He gets it...

Hi Snowflakes, My son sounds very similar to your daughter. He was dx'd at age 13 and his only quality of life issue with Cohns was an abscess with a perianal fistula. It was mismanaged and required a lot of surgeries but finally got better with a fistulotomy. He was dx'd because he stopped...

Thanks everyone. That was my initial thought after reading the same stats. We are constantly balancing risks in everything in life. I know the biggest risk for my 18 and 16 year old occurs every time they get in their cars! I also really like the idea of remicade because I am nervous when...

We went to a major teaching hospital with 2 large hyperbaric chambers that treat up to 10 people in each. My son was seen by a hyperbaric medicine MD before and after each treatment as was everyone else. There are some "fake" units that carry high risk and don't yield the excess oxygen levels...

Hi Everyone, How did parents of teenage boys or young adult males decide to take remicade. What is the latest research about the risk with this. My son's Crohn's is limited to the terminal ileum but he just got a second perianal abscess. Surgeon is checking next week to see if there is a...