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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

boobearsmom
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/10/2008 10:42 PM (GMT -7)   
 
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


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

Post Edited (boobearsmom) : 1/12/2008 8:33:38 PM (GMT-7)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/11/2008 6:51 AM (GMT -7)   
Wow, I'm so sorry your baby is having to go through this, and you also. I don't have a child with UC so can't help much, but I'm going to kick this back up to the top so you'll get some responses today.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 1/11/2008 7:05 AM (GMT -7)   

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.

 

 


Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3790
   Posted 1/11/2008 7:13 AM (GMT -7)   
Very very sorry to here this. My son lost his colon at age 21 so I know what is going on in your mind. He is doing fine for the past 8 years with a j-pouch.
Anyhow I hate to say this but you doc is being quite agressive now. Hopefully your son will not have to go the the remicade, but if he does hopefully it will work.
That being said please start to educate yourself on j-pouch surgery.
Go here for a good start www.j-pouch.org
Old Mike
 

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 1/11/2008 8:08 AM (GMT -7)   
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.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


boobearsmom
New Member


Date Joined Jan 2008
Total Posts : 13
   Posted 1/11/2008 3:48 PM (GMT -7)   
Thanks to all for your advise and encouragement........I really appreciate it.
In response to some of the post, ithurtsmom....he isn't on probiotic pills, but does include yogurt in his daily regimine.princesa...thanks for the heads up about the Biaxin.......will definately talk to the doc about it..
Update today............it's official...........the doc called after checking him for TB (neg), he will start remicade Monday
Wish us luck....hope this is the miracle cure for him that I've read from some of you on here.
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
folic acid
b-12
325 mg iron 3 x daily
potassium
multivitamin


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/11/2008 4:04 PM (GMT -7)   
I hope it works as well for him as it has for me, boobearsmom. I'll be getting my 14th infusion Monday.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   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

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


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   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)


boobearsmom
New Member


Date Joined Jan 2008
Total Posts : 13
   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


Kelsie
Regular Member


Date Joined Jan 2008
Total Posts : 60
   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!!

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   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


UC Mom
Regular Member


Date Joined Jun 2007
Total Posts : 146
   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

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 2:53 PM (GMT -7)
There are a total of 2,905,891 posts in 318,900 threads.
View Active Threads


Who's Online
This forum has 158247 registered members. Please welcome our newest member, Jodi Walker.
308 Guest(s), 13 Registered Member(s) are currently online.  Details
PeppermintTea, Artist Mark, Gemlin, Hoagie, 1000Daisies, AnxietyKelller, Maverick6981, Imbeccak, garyi, OriolCarol, AZ Guy, kodaska, iPoop