My 10 yr old has crohns and were thinking remicade????

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daboo w
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 7/15/2008 1:22 PM (GMT -7)   
We have cycled through prednisone and entacort a few times with no great help. We have finally decided to try remicade. Anyone had experience with remicade and thier child? Thanks David

BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 7/15/2008 6:23 PM (GMT -7)   

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 upping his dose of Asacol.  Nothing really seemed to work for him.  The Remicade does seem to be helping - not a miracle drug yet, but my son does seem to have more energy and just seems to feel better.  However, he is still having loose stools 3 times a day, so I'm hoping that improves with more time.

Ben has no trouble with the infusions, and since we are at a children's hospital, there is a ton of stuff for him to do, such as Playstation games, DVDs, and air hockey!  They even provode us with lunch for free.   It takes us about 6 hours there from start to finish.  Please feel free to ask if you have specific questions about the infusion, etc.

Something you should know that I learned the hard way.  If you are in the U.S., there is a program called Remistart where the company will reimburse you up to $400 for the cost of each infusion (up to the first 8 infusions or one year).  The amount reimbursed depends on your copay.  I think it has to be over $100.  Anyway, you need to register for the program BEFORE your first infusion, otherwise they won't reimburse you for it (they will only go back 2 weeks from the date of registration).  Here is the website for Remistart.  The info is near the bottom of the page.        http://www.centocoraccessone.com/patientassist/intro.jsp

Also, please check out this other website that is geared for parents of children with IBD.  The parents there have really been through it all and are very willing to share their experiences and advice.  The site is    http://www.dragonpack.com/ibdsupport/parents/index.html

Hope this helps! 


Nancy
 
Son Ben, 14, diagnosed 3/06
Remicade, Asacol, Multi-vitamin


picklechic
Regular Member


Date Joined Feb 2008
Total Posts : 32
   Posted 7/16/2008 6:21 PM (GMT -7)   
My 2.5 year old daughter has been on Remicade since February. Unfortunately it has stopped working for her, but it has definately been used on kids. I second the dragonpack board. There are lots of parents of kids on Remicade on there.
Kimberly
Mom to 2.5 year old daughter with Crohn's Disease and Turner's Syndrome
dx. 1/08, currently on Prednisone, Prevacid, 6MP, Remicade, Iron and Zinc
 


Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 7/16/2008 7:35 PM (GMT -7)   

Hi,

I am not sure where you live but in Canada you can't get Remicade for the use in children.  It was available but they now will not allow it to be prescribed to a child.

Shoshanna

 

 


samsmom
Regular Member


Date Joined Nov 2005
Total Posts : 77
   Posted 7/18/2008 8:47 PM (GMT -7)   

David,

     My son is on Remicade.  He is also 10.  He was diagnosed when he was 7.  He has been on Remicade since 1 week after his diagnosis.  He currently has his treatments every 12 weeks!  He responded immediately to the Remicade.  He is living a normal, pain-free life a 10 year old kid should.  He is actually at Camp Oasis right now and is coming home tomorrow.  It is the first time he has been away from us. 

   When he started the Remicade he was 4ft3 and 63lbs.  As of 2 weeks ago he is 5ft and 110lbs. 

Best of luck with the Remicade, I hope it works for your son as well.

Debbie

 

 


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 7/19/2008 5:43 PM (GMT -7)   
I am an adult who did Remicade and just want to say how hard it must be for your son. I would try anything I could to make his life better. poor kiddo. Personally as an adult, I think Humira works better and is less traumatic. But as for as kids go, you don't hear about alot of kids dealing with this. They must be out there though, good luck with your choice and blessings to you all!

Bane
Veteran Member


Date Joined May 2007
Total Posts : 589
   Posted 7/19/2008 8:29 PM (GMT -7)   
I started Remicade when I was ~16. Didn't cause me any long-term ill effects that I know of, except that it stopped working after a few years.

Aside from the medical risks inherent to any treatment of Crohn's, the only downside is that Remicade is administered through infusions, which typically take a good chunk of time (I can't remember exactly how long it took for me). Movies, video games, and books are highly recommended. Many people get tired after the infusion, and I know I always slept heavier that night.

I found the infusion to be much more convenient, actually. Self-injection creeps me out, even after a year of Humira.
20, Male, diagnosed over Christmas Break of my Junior year in High School. BEST CHRISTMAS EVAR LOL

(not really)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/20/2008 6:19 AM (GMT -7)   
I'm in Canada too. Here's the link about cancer and remicade with young adults and children:

http://www.hc-sc.gc.ca/dhp-mps/medeff/advisories-avis/public/_2006/remicade_3_pc-cp-eng.php
 
I'm not able to use remicade or humira because I have a mild heart problem and it can cause fatal heart failure in ppl with even a mild heart problem.
 
This drug is serious stuff.
 
Have you heard of Low Dose Naltrexone? Some people here have been on it and say it is helping them.
 
Also, if you have a little money and you're desperate, you can look into buying hookworms. There are a few clinical trials in the States (TSO), England, and Germany which show HUGE remission rates with Intestinal Worm Therapy.
 
There is a clinic in Mexico that sells Hookworms which regulate the immune system and almost all people with CD go into remission for 5-18 years. I emailed them myself, but they won't give them to me because I am pregnant. I'll look into this again later.
 
Best wishes.

Post Edited (Roni) : 7/20/2008 7:28:44 AM (GMT-6)


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 7/20/2008 10:33 AM (GMT -7)   
No advice,just wondering,what symptoms did your kids have? They are watching my 8 yo now,he's had a little weight loss,and sometimes has sudden urges to go,he goes back to his Pediatrician next month,but just curious :-)

samsmom
Regular Member


Date Joined Nov 2005
Total Posts : 77
   Posted 7/22/2008 9:27 AM (GMT -7)   

LynnRN

    My son presented with stomach aches.  Never had diarhea or blood in his stools.  Lost about 5 lbs in a 4month period.  Was a little anemic. 

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