Remicade & my 14 yr old son

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hellokitty3895
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/12/2009 12:49 PM (GMT -7)   
In December my son started losing alot of weight, I then started noticing this awful smell after he went to the bathroom. I took him to our local hospital where they told me he was anorexic. A couple weeks after that he went down to 82 pounds and didn't move from his bed. I took him to a different hospital,  they diagnosed him with Crohn's and Ulcerative colitus, he was 13. The doctor's told me he had ulcers from the top of his esophagus to the bottom of his colon and that the Crohn's was mostly on one side of the his colon. During an upper GI test they also found he had malrotation and needed surgery to correct, they took his appendix and untwisted his bowel. He spent 5 days in the hospital thowing up and having bloody diaherra. He is on pentasa 3 times a day which he can't swallow so he opens it and puts it in ice-cream. He is also on Prevacid which disolves on his tongue so that isn't too bad for him. Finally the Crohn's was put in remission, that was 5 months ago, today my son is currently in another flare and weighs 88 pounds, he is now back on prednisone and currently takes 270 pills a month.  The doctor has now mentioned remicade infusions which he feels will be the best course of treatment but reading about the medicine worries me. Is there anyone that has their child on this medicine and if so how is it working? 
cry  

cureforcrohns
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/14/2009 7:53 AM (GMT -7)   
I've gone through the same question with my daughter. She was diagnosed last October, she was 10 (has since turned 11), we've been through the whole realm of meds, including remicade. Her first 2 infusions went great, she had a reaction to the third one, trouble breathing, throat closing up on her, very scary. We just went on the 12th (august) to try another infusion. Premedicated with tylonal, benedryl, solumedrol and she had a reaction after received 1 tsp of remicade. I cant tell you how stressed I've been about reading about TB and Lymphoma. I hate it. Part of me is glad she had the 2nd reaction so we can stop it, and she is doing very well right now, but now I'm stuck with, what happens when things go downhill? The next med is humira, not FDA approved for kids. HELLO, I want nothing to do with that. We have since tried going a more natural root. She is taking colazol and cipro right now along with fish oil and total balance vitamins (order online) and she seems to be doing pretty good. We are going to start Reiki sessions, of which I have always laughed at Reiki, but when its your childs health, you'll try anything - within reason. I worry now that my daughter had reacted to the remicade, that she may be more suseptable to contract some of the bad side effects. I know how hard it is. I've had many sleepless nights, many nights in the hospital (2 weeks in January). My daughter lost 12 pounds in 3 weeks last summer, which prompted the colonoscopy, i knew it wouldn't be good, my father had his colon removed 10 years ago due to diagnosis. Anyone who reads this who has a child on humira, I'd love to hear from you because I am just not willing to go there right now.

BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 8/14/2009 5:53 PM (GMT -7)   
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 everything else and you just want to see your child get well.  It did take me a while to agree to the GI's recommendation of Remicade.  It wasn't until his sed rate was over 100 that I finally agreed to try it.  And now I wish we had done it sooner.  The Remicade has been great for my son.  He gets no side effects from it and it has given him a lot more energy.  The only problem we are having is that the Remicade started to not last the full 8 weeks between infusions so now Ben gets a double dose every 6 weeks.  I won't lie to you - it's a hard thing to sit in the hospital and watch those chemicals dripping into my son's arm.  But I know I'm doing the right thing when I see that he is growing, has energy, and is able to do whatever he wants to do.
 
If you do decide to try the Remicade - look into the Remistart program.  If your co-pays are high it can really save you a lot of money.  And sign up BEFORE your son's first treatment.  Out first treatment wasn't covered because I waited until I received my EOB and since it was more than 2 weeks after the treatment it was too late.
 
Also, if you check out the website http://www.dragonpack.com/ibdsupport/parents/   you can hear from a lot of parents whose kids are on Remicade or Humira.  It's a website for parents of kids with IBD.
 
Best of luck with your choice.  I know it's not an easy one.
 
Take care,
Nancy (son Ben,15,CD dx 3/06;  Remicade, Sulfasalazine, Fisol, Boswellia)

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 8/14/2009 6:16 PM (GMT -7)   
I took remicade infusion long ago...My input would be yea its ok and it feels like it helps...anyways my suggestion would be to put on an IV to get him hydrated. It is crazy to spend money on expensive treatments when an plain IV with maybe some anitbiotics will probable work just as well as it seems it flares with possible alergy (maybe to a food) Suggest protein instead of the ice cream [although ice cream does home some food stabiliser in it which is good such as galactomannan] just my thoughts. even plain IV for a couple treatments would help.
remicade is given like an IV (its diluted into solution) just like getting IV, so why not get hydrated first before putting all the meds in too.

ma-in-law
New Member


Date Joined Aug 2009
Total Posts : 10
   Posted 8/15/2009 12:38 AM (GMT -7)   
My son was diagnosed at 13 with severe Crohn's. No one wanted to believe my son had Crohn's either-- anytime I mentioned it as a possibility, doctors would give me that "Oh geez, another mother with access to WebMD" pitying look. Finally, after my son was down to 80-something lbs, had endured surgery to repair a perirectal abscess with fistula, and a couple of hospitalizations, he finally received a diagnosis. After a year of treatment with a sub-par pediatric GI, and trying tons of pills that did not work (including all of the ASAs and lots of others; we were at 20-something pills/day, easy), we finally found a top ped GI. He stopped all of the meds that weren't working (all of them except the vitamins) and put him on Remicade every 8 weeks.

A godsend.

Immediate change in symptoms. Diarrhea, pain, fatigue level, appetite, social interest-- huge improvements with them all within a couple infusions. Now he's been on Remicade exclusively for three years (he does every 6 wks now) and he's in remission, doing great, and weighs 30+ lbs more than back when he was sick. His growth height-wise was affected from the steroid use that first year, but we have high hopes that he'll catch up later on (anecdotally, that seems to be common). The only persistent problem he's had is with fatigue, but he's also very active and I think it would wear anyone out-- maybe just him a little more than others. We think this is as good as it probably gets for him, and it's a vast improvement.

Anyway, we're pretty thrilled with Remicade, and try not to think too much about the scary Worst Case Scenario rare-but-possible side effects. My son is hanging on my arm right now watching me write this and giving a wholehearted endorsement.

ma-in-law
New Member


Date Joined Aug 2009
Total Posts : 10
   Posted 8/15/2009 12:46 AM (GMT -7)   
Also, my son's ped GI wanted to try him on Cimzia so that he could have a more consistent level of meds in his body and not have the "Remicade fade" near the end of the six weeks, but our insurance wouldn't cover it. I'm getting new insurance next month and we're going to see if they'll cover Cimzia. Instead of the infusion, which takes a few hours each time, a nurse will come to the house and teach the family and patient how to inject the meds (I want to say every 2 weeks?). If I remember correctly, the potential side effects were pretty much the same as Remicade. My son's doctor seems to think it might work even better for my son than Remicade. So, another thing option to investigate...
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