In terms of cost - I would check with your insurance company. The Humira costs us $100 for a 3 month supply. When my son was on Remicade, it cost us hundreds of dollars for each infusion (for him -...
JavaJay, I don't really know how the Humira feels since I am not the one doing it. But I wanted to let you know that my 16 year old son is on Humira. He uses the pen since he did not want to see the...
Hi, I totally understand your fear about Remicade. My son was diagnosed with CD in March of 2006 when he was 11. After about 3 years of trying many different medications, I finally agreed to have him...
scbsmom, Milk Thistle supports liver function. Ben has Gilbert's syndrome (which is hereditary) which causes him to have increased bilirubin. It's nothing to worry about in terms of his health, but...
scbsmom, I just wanted to let you know that I also have a son with Crohn's disease. When none of the other medications worked for him, he also went on Remicade, which made a huge difference in how he...
Debra, My son's GI discovered he had h. pylori during his last colonoscopy about 1 1/2 years ago. Before that time, none of the medications we tried had worked for him (it had been years), and his...
Music Man, Remicade was the only medication that my son was on that actually helped him. In fact, it put him into remission. Only thing to be aware of is that you might have to tweak the dosage. They...
Wendy, I know it's frustrating at the beginning because you want to do the right thing for your child and you're not sure what that right thing is. I spent so many hours on the internet researching...
Wendy, When my son was diagnosed at age 11, his GI put him on a low residue diet. Ben is also a picky eater, and was actually happy because now I couldn't force him to eat vegetables! I still have a...
Hi, For my son's first colonoscopy he had to use the Mag Citrate which he had a bad experience with (throwing up, lots of tears, and refusal to drink any more). When it came time for his second one,...
Hi, My son was on Lialda for almost a year and had absolutely no side effects. He did end up with an elevated bilirubin level, so his GI took him off the Lialda for the last 6 weeks to see if his...
Have you tried calling the makers of Remicade to see if there are any financial assiatance programs they can offer you? Centocor has what they call the access one program. You can call them at...
Hi, Just wanted to let you know that if you go to lialda.com, you can sign up to get a free 30 day trial of the medication. They also have a prescript ion card that they can send you so that your...
Hi again, Just wanted to answer a couple of your questions: Entocort is a steroid that does indeed have less side effects than Prednisone as it is not systemic (spread throughout the entire body)....
Stayingpositive, I am the mom of a 15 year old with Crohn's. He was diagnosed when he was 11. Unlike you, he does not want to talk to anyone about this disease and is pretty much in denial about it....
We adjusted the dosage and time between infusions fairly soon after starting the Remicade. I can't remember the exact timing, but it NEVER lasted the full 8 weeks for Ben. I would definitely talk to...
Hi, My son has been on Remicade for almost 2 years now. When he couldn't last the 8 weeks between infusions they first tried shortening the time in between. Eventually they ended up doubling the...
My son gets Benedryl (and other premeds) through the IV before he gets his Remicade infusion. But he gets his infusion in a pediatric infusion center, so maybe that is different. Good luck to you....
Angie, One other place where you might find some help is http://www.dragonpack.com/ibdsupport/parents/ It's a support group for parents of kids with IBD. I know there are parents on that board that...
My son's GI put him on Prednisone to get rid of the erythema nodosum. It worked, but it took a LONG time for those bumps and bruises to go away entirely. Best of luck to you. Nancy (son Ben,15,CD dx...
Hi, Just want you to know that my 15 year old son has been on Remicade for about 16 months now. It's not an easy decision to make for your child, but you get to the point where you have tried...
Hi, I can't help you too much on the first part of your question as my son has not needed any surgery and experiences no pain with his Crohn's disease. Crohn's has not stopped Ben from attending...
Obviously it varies patient to patient, but my son with crohn's colitis had been on Asacol for 3 years with no real relief in symptoms. During that time we had also tried other medications -...
Hi, My son Ben is almost 15 and has Crohn's disease. He is due for his next Remicade treatment on May 11th, but lately has not been feeling well and has had diarrhea about 6 times a day. I am going...
Melissa, My son was 13 when he went on Remicade and has been on it for about one year now with no problems. I can tell you that there are plenty of people your son's age or younger on Remicade. The...
Pauletta, Sorry to hear about your son. My son also has Crohn's disease, although he was 11 when he was diagnosed. I just wanted to give you the website address for the Dragonpack site that was...
Now, I haven't tried this myself, but two of my sisters-in-law did with great success. You have the child in the house without any underwear or pants. They don't like the wet feeling when they go to...
Talk to your GI about it, but there is hope - at least the Remicade does seem to be working (at least for a month). The same thing happened to my son. The first thing his GI tried was doubling the...
Jennifer, I'm so sorry to hear about your daughter's diagnosis. My son is 14 1/2 also and was diagnosed with CD at age 11. This site is great - lots of information, support and advice. I also wanted...
Hi, I use RemiStart to help pay for my son's Remicade treatments. It has been great! Our insurance isn't good, so we would have had to pay almost $700 for each treatment. Now the RemiStart pays for...
Well if you're worried, it certainly wouldn't hurt to have them test a stool sample to see if there is any blood in it. That was the first step our pediatrician took with my son when we were trying...
Hi, My son got erythema nodosum last year. His GI said that it was an external symptom of what was happening on the inside, and in fact his sed rate was over 100 at the time. He was put on prednisone...
One additional thing you should know about Remistart is that you need to register for the program before you get your infusions. Otherwise, they will only reimburse you for any infusions that took...
David, My son started Remicade in April and has had 3 infusions so far. Although Prednisone worked for him, we didn't want to keep him on it long-term. We also tried Entocort and 6-MP, as well as...
Hi, My son got EN when he was having a flare of his Crohn's disease. His GI had him take Prednisone to get rid of it. Worked fairly quickly to get rid of the pain, although the bruising took a while...
Cra43, This may be old information, and I haven't actually tried it myself, but try giving Centocor (marketer of Remicade) a call. It looks like they have a financial assistance program. The phone...
Hi, My 13 year old son has had Crohn's for 2 years, and like you I struggled with the decision to put him on Remicade. However, after his colonoscopy in March it was very clear that the 6-MP, Asacol,...
chroniemomx2, I don't actually know whether it was the pill itself or just the shell. The GI just said there were 3 Asacol that were in the colon that she had to remove. I assumed they were the...
Hi, My son had a colonoscopy yesterday afternoon around 1:30. His GI told me that during the scope she had to remove 3 Asacol pills that were in her way. I'm assuming that those were the 3 pills that...
My son was 11 when he was diagnosed. He never had any aches and pains and still doesn't (2 years later). He just started going to the bathroom more frequently and having loose stools. Then he began...
I read in one of your posts that you go to a naturopath. I've been thinking about having my son go to one, but am not really sure what to expect. Is this something you would recommend? I live in New...
Hi, So sorry to hear about your son. My son was diagnosed with Crohn's disease 2 years ago when he was 11. I have found this site and the Dragonpack site to be extremely helpful. When my son was...