Pediatric Crohn's-anyone with advice?

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GeorgiaRN
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/5/2008 5:36 AM (GMT -7)   
Looking for others who have children with Crohn's. I have a 9 year-old son with Crohn's. Heading for Remicade.... anyone with any advice?
Georgia RN
Living for Christ
 
Mother of 9 year-old son with Crohn's disease. Diagnosed in 10/2006. Took Pentasa with no results. Started on Imuran 2/2007. He has been off and on Prednisone for the past year and increased Imuran 2 months ago. Continues to have a poor appetite, weight loss, fatigue, and stomach pain.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/5/2008 6:35 AM (GMT -7)   
I don't have any advice, but I can tell you there is another website for mother's of young Crohns patients called Dragonpack. But there is also a few mom's of young Crohns patients on this site too. I am sure one of them will be along soon. I sure do hate hearing about a little one having this disease, its hard enough on me, I can't even imagine what life is like for your son. I do know many folks have had great success with Remicade. Hope it helps your little one.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


GeorgiaRN
New Member


Date Joined May 2008
Total Posts : 5
   Posted 5/5/2008 12:03 PM (GMT -7)   

Thanks Nanners!

I feel like I am on the verge of a "breakdown". We are going to see the doctor tomorrow. I believe he will suggest Remicade. I'm just so angry that my son had to deal with this!! I wish so much that it was me. When I look at the options, they are all terrible options! I just want to scream!!


Georgia RN
Living for Christ
 
Mother of 9 year-old son with Crohn's disease. Diagnosed in 10/2006. Took Pentasa with no results. Started on Imuran 2/2007. He has been off and on Prednisone for the past year and increased Imuran 2 months ago. Continues to have a poor appetite, weight loss, fatigue, and stomach pain.


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 5/5/2008 2:58 PM (GMT -7)   

 

  Hi Georgia RN,

  I was 14 when I was diagnosed with Crohns of the terminal ileum.  I had a miserable 2 years between 14 and 16 that included plenty of flares, abcesses, etc.  I tried the asacol, pentasa with no help. I am very sorry that immuran is not working. I had a lot of success with it between 17 - 22. I started remicade at 22 and had a fair amount of success with that. Recently I had surgery which is slowly becoming a blessing.

I know what it is like to be a kid with Crohn's. It hit me one day during algebra class. Never forget it. The worst belly pain ever. It kept me up and my parents just couldn't understand it.  I even tried ignoring it for awhile, that didn't work. I just wanted to be a normal kid, hang out with friends. Ultimately, it won and I was diagnosed.  The bright side, I am now 29, done with school, and doing pretty well. It was hard, I know exactly what you guys are going through. Hang in there, don't view remicade as a bad thing. Can be very effective.   Good luck with the dcotor, let us know how he makes out.

ajz


abl
Regular Member


Date Joined Apr 2008
Total Posts : 30
   Posted 5/5/2008 4:19 PM (GMT -7)   
GeorgiaRN~

I am so sorry to hear about your son. I wanted to tell you that I would be praying for him and your family. I hope the doctors can find something that will help him to feel better soon.
~Anna
 
30 years old~ Diagnosed in 2000 with Crohn's~ Currently taking 3000 mg Pentasa, Prednisone, and Bentyl.

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