Mother of 7 year old diagnosed with Crohn's

[tylerw]

mother of 7 year old diagnosed with Crohn's

My son has Crohn's and was diagnosed when he was 6. He has had two flares and is on the decline right now. We are trying to decide if we are willing to put him on Remicade. My husband and I are very scared of the long-term effects and the unknown of this drug. He is not growing like he should and is just not the same active, healthy boy he was before getting Crohn's. It is so hard being his mom and not knowing the best thing to do for him. I commend all the people on this site willing to share their stories!

 

[imisspopcorn]

Welcome to the forum. I am always so sad to hear that such a young person has to deal with this disease. I worry all the time about my kids possibly having this disease someday. I personally have just started taking Remicade. I am awaiting my 3rd dose in early October. I can imagine the hard decision you have regarding this drug. I hope some other parents with kids can give you better insight on their experiences. Please search the treatment threads, there is a lot of good info, and even a "Remicade club".

 

[CrohnieCarolyn]

So sorry your son is so young to have this disease, BUT I believe if you are one of the unfortunate ones to have Crohns, the drugs they have now, like Remicade can save him suffering now... Yes, they don't really know the long term effects of these drugs but you have to look at the quality of life issue NOW. Not many of us could function without these drugs or have much of a quality of life at all- so that is the way I look at it - I shall worry about the long term effects down the road ...our options are unfortunately limited with this disease until there is a cure...I would try everything though because everyone is different depending on where the disease is and how much of the bowel is affected. Good luck and keep us posted.

 

[Guestly]

You are so brave, my son has ulcerative colitis - he is 8, and has been sick since he was born. At one point he got so thin he was tube fed for a year.

My hubby and I fretted over the various interventions, but in the end came to the conclusion that the time to grow is when you are young - onve he gets to his teens he can't make up lost ground. So we went for everything, and having been on the 0.4centile, he has just hit the bottom end of 50centile - virtually unheard of to make such a dramatic jump in weight and height. He also just won silver in a county judo championship....if you had seen him two years ago you wouldnt have put odds on him managing to put a pair of training shoes on (he was that weak), let alone getting trophies for a sport.

The way I see it - he now has a bit of reserve for future hurdles - you know?

Its a tough decision for you and your hubby - this is just how we did it with our little scrap - good luck, and I'm thinking of you.

LishyLoo

 

[farm]

:welcome: I'm very saddened by this story, especially since I have a 9 year old son at home who is have some tummy problems. Nothing real serious and I hope it never gets serious.

I wish you all the luck in the work and a very speeding road to remission.

 

[FaithNPrayer]

I was on remicade before in my early teens but it was a bit new then and I only had a dose or two at the time and it made me feel great. Now since the doctors know more about it, most of them(from my experience) want you to be on remicade for the long haul. I was on Remicade for almost two years and I just recently had my last dose in March of 2009. It was my decision to stop the remicade, the doctors did not want me to stop it but sometimes you have to listen to your own body. There are a lot of long term effects from remicade but there are a lot of benefits from it as well. I felt great while I was on the remicade but eventually little things started happening like me feeling fatigue, I was bruising easily, starting to develop migranes, starting having unexplainable reoccuring discharge and then I developed psoriasis. My dermatolagist suggested that the psoriasis was a direct result from the Remicade because I was his fourth case that came in who was being treated with remicade to develop it. Ironically, people with psoriasis are treated with remicade; go figure???? Anyways, I too was worried about the long term affects, if these small things were happening to me, what else was bound to happen and only be worse? Sorry I dont have much good news to say about it, if the remicade works for him, you will definitely see a big difference in his health but you have to monitor him closely to be sure nothing else gets out of hand. Research the remicade more as well as other alternatives. Good luck with everything...