need advice for 8 yr old son, dr is recommending remicade

 

my 8 yr old son is in the middle of his 2nd flare in 7 months, his last colonoscopy 2 days ago, the Ped. GI said he was so inflamed he couldn't get a whole scope for fear of damaging his colon due to his colon being thin from being so inflamed. Since April he has been on Asacol then switched to Lialda (3 a day), was taking entocort (9 daily) but has been on 60 mg of prednisone since Christmas due to a flare, takes reglan and tums for his stomach (dr mentioned scars from bile), 3 cortisone enemas daily(although actually getting 3 is almost impossible, he is so tired and frustated with them)

along with vitamins....... now the dr says he needs to start on remicade because his colon is so ''HOT" right now he really needs to be agressive with treatment, he (the dr) had such concern on his face when he came out of the procedure that my hubby was scared.  Does anyone here have a child on remicade and if so how much did they start with, etc ,etc   the dr is talking giving him a treatment and then repeating it within a week if no change...any advice?

addition to this original post forgot to mention that now he is taking 1000mg of amoxicillin and 1000 mg of biaxon daily since his colonoscopy due to possible infection  (wbc at 27000)

dr mentioned his hope for remission with remicade or would be discussing surgery

My heart goes out to you.  My daughter is 6, so I know how your feeling.  I didn't see any probiotics listed with your son's daily meds.  That is something you should look into and put him on.  You should also look at www.dragonpack.com.  This is a site where parents of children with IBD exchange info, much like healing well.

I'm surprised his doc would put him on Biaxin as an antibiotic. That was the drug that triggered my onset of UC. My GP had prescribed it and it immediately caused severe D and bleeding. When I called my GI's office, they told me it was one of the worst antibiotics as far as digestive side effects goes and that no IBD patient should use it. You may want to ask about that... it could be making a bad situation worse.

I hope it works as well for him as it has for me, boobearsmom. I'll be getting my 14th infusion Monday.

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)

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!!

Hi Kelsie,
Can you please email me at [email protected]?
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!