Posted 1/11/2008 4:44 PM (GMT -7)
Hey! Sorry your son is having to go through this. Please keep us posted on how the remicade works for him.

On a side note...can you limit your signature to 10 lines or less? Thanks!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

https://www.healingwell.com/donate
Co-Moderator UC Forum

Posted 1/12/2008 7:56 PM (GMT -7)

I am new to HW, but saw your post and wanted to reply.  I have a 14yo with UC that had their 6th Remicade today.  I has been WONDERFUL!  Something FINALLY made life "normal" again!  The first time I heard about Remicade there was NO way I would let my child be on it, but here we are, and we couldn't be happier!  My child is on no other medications at this time!  What a relief to get rid of all those pills!  I was very nervous about it, but it was a piece of cake.  A few hours of our day every 8 weeks and between we can forget about UC!  (or at least try!)  I just hope and pray that it continues!!  All the possible side effects used to be what I feared, but now all I fear is that it will quit working!!  I just want to wish you the best--it can be nerve wracking, but after the first infusion, I thought to myself...I got all worked up over this???  I just hope your child has the same wonderful response mine has!!

Take care!

Kelsie (child with UC-Remicade)

Posted 1/12/2008 8:24 PM (GMT -7)
Kelsie, thank you soooooo much for posting, it really made me feel better hearing from someone who's child has been on remicade with good results.......seems we had the same thoughts and worries as you did, just hope we get the same results!!!!
I also hope that remicade continues to work for your child.........will add you to our prayers!!!    thanks again!
mom of 8 yr old son dx'd with UC (entire colon) 4/07
asacol then switched to lialda 3 pills daily
entorcort 3 pills 3 x daily (normally) currently on 60 mg of pred daily due to flare
cortisone enamas 3 x daily
reglan 5 mg 4 x daily
tums 4 x daily
vitamins,minerals, yogurt daily

Posted 1/12/2008 9:00 PM (GMT -7)
You are very welcome. I wish you the best on Monday, let us know how it goes! There has been one time that my child didn't feel well afterward, but other than that, feels fine. Often a little tired from the benedryl they premedicate with, but no big deal. A small price to pay. Speaking of price, I hope you have good insurance coverage, it is very expensive. Luckily we have great insurance. Oh, a little advice....have your child drink a LOT! Sunday and as much as he can get in on Monday. That has helped our's with the IV's. Another thing...if you can, use emla cream for the IV. Put it on for 2 hours before--it will REALLY help! Some people will tell you it only needs to be on there 45 minutes, but our experience has been that it doesn't work well enough in that amount of time. You may also hear that 2 hours is too long, but it really isn't. I actually recently tried it, and I didn't feel a thing with the IV. Mine had been on for 2 1/2 hours before they got around to the IV. We have it at home due to the frequent blood draws/IV's. Your dr. can write a script for it. I figure these kids go through enough, why not give them a little break from SOME pain???? We had IV nightmare experiences!

Good luck!!
Posted 1/13/2008 3:19 PM (GMT -7)
boobearsmom - so sorry to hear your baby has such an awful case of UC - will be thinking about you!

Kelsie - Thanks for sharing the great tips about Remi for youngsters.

Both - Welcome to HealingWell!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate

Posted 1/13/2008 4:56 PM (GMT -7)
Hi Kelsie,
Can you please email me at jennajackh@aol.com?
Your email isn't on HealingWell, and I would like to ask you a question, if you do not mind. If you do, no problem :)
Thanks!
UC Mom
Son diagnosed 10, 2006 at age 15
12 asacol daily
Culturelle Probiotic
Omega 3
Multi Vitamin

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