9 yo just diagnosed--remicade already?

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mommypoopoo
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/4/2009 7:52 AM (GMT -6)   
My daughter was just diagnosed one week ago. She evidently has right sided and transverse uc. Doctor says he wants to start Remicade asap. She is now only being treated with diet. This is all overwhelming to me. I have read up on Remicade and it looks like its been banned in Cananda for use in children do to its link with cancer. Any input would help. Her symptoms are diarrhea and intermittent tummy aches, nothing horrible. But doc says she's alot sicker that she looks.

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16277
   Posted 3/4/2009 8:09 AM (GMT -6)   

I personally wouldn't jump to remicade right away. I would be worried about the longterm effects but also the constant treatment for the next however many years. Most people don't stop once they start and she is only a child. If you're unhappy with the way this GI is handling your case, definitely see someone else. It is smart to get more than one opinion. I have had great luck with 5ASA treatments. I know I can only focus on today because tomorrow I might be the one looking into remicade but until I exhaust all the other options, I don't think so.

I am a lot sicker than I look and I try to keep medication to a minimum and these days, I am feeling pretty good.

Why does he say she is a lot sicker than she looks? Is she losing a lot of blood? Does she have polyps? He shouldn't say things like that to persuade you to choose a drug with possibly lethal longterm effects without backing up the argument. I have heard these drs get kickbacks from pharmaceutical companies and Remicade is extremely high cost. Let's keep that in mind. Not saying your doctor is corrupt but you need to make sure he is looking out for her best interests and not his own. I would speak to at least one more GI before making any decisions.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


bookworm21
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Date Joined Mar 2008
Total Posts : 1766
   Posted 3/4/2009 8:16 AM (GMT -6)   
I'm sorry your daughter has UC, especially at such a young age.
 
How severe is her UC? Have you seen her c-scope pictures? Is she anemic? Does she bleed a lot? Ask the doctor why exactly he thinks she should start Remicade.
 
I know Remicade sounds scary, but there have only been a few cases of cancer and those have been with patients using both Remicade and immunosuppresants (6MP, Imuran) at the same time. I still go to a pediatric hospital, and a lot of kids come in for Remicade, so it's not that uncommon. But the thing about Remicade is that it's only been around for 10 years, so we don't what it's long-term effects will be; this is what freaks me out even though Remicade has put me into remission.
 
I'm surprised that her doc hasn't put her on any of the 5ASAs, like Asacol/Colazal/Lialda/Sulfa. If you don't think her UC is too bad, ask for one of the 5ASAs and see if she improves. I remember that at initial diagnosis my GI wanted to put me on steroids, and I refused; I went into remission within a couple of weeks with just Asacol.
 
Ultimately, the decision is up to you to decide what's best for your daughter. But try to find out more specific info about her condition before making a decision.
 
A good book that I recommend to read is Jill Sklar's The First Year: Crohn's and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed.
 
Oh, and welcome to HealingWell!


Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 

Post Edited (bookworm21) : 3/4/2009 7:19:43 AM (GMT-7)


mommypoopoo
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/4/2009 11:47 AM (GMT -6)   
Thanks both of you for your advice...i am definitely going to ask another GI guy for his recs.

JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 3/4/2009 12:22 PM (GMT -6)   
Hey mommypoopoo! I have two kids with UC, my 17 year old was dx at 10 (left sided) and my 10 year old was dx at age 8 (pancolitis). We have never done remicade nor has it been suggested for either kiddos. Back in 2003 surgery was talked about (might have been before Remicade) for my son, thankfully the steroids kicked in and we dodged it!!!

I know in some schools of thought the doctors are starting treatment at the top, but I don't recall the why behind it. There is a IBD user group specifically for parents of IBD kids and many of the kids are on Remicade. There are kids from all over the world (Australia, Canada, UK, Norway, etc.) so you get to learn alot about how IBD is handled elsewhere. The link is: http://www.dragonpack.com/ibdsupport/parents/ There is a lady there named Patricia that has such a vast knowledge of the treatments and I know she has mentioned the "treating from the top down" approach (meaning Remicade from the start).

How have your daughters labs been? Maybe that is what he means by she is sicker than she appears. Right sided colitis is more rare (it is where the bulk of my daughter's disease is located and makes me nervous that it might actually be Crohns). Has your doctor run the Prometheus test that tests for markers that help determine which disease it is?

I am so sorry you are having to face this. It is so difficult to make those big decisions. I would lean toward getting another opinion especially if your doctor did not fully explain why he doesn't want to try "safer" meds first.

{{{{Hugs}}}}
Julie

Mom of Son 17 UC dx 07/02, Sulfasalazine 6g, Azasan 75mg, Cortafoam (when flaring), folic acid, L. Reuteri, Culturelle, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Colazal 750mg x 3, 6MP 12.5mg, Iron, Vit/Min., Culturelle


Meesh
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Date Joined May 2006
Total Posts : 619
   Posted 3/4/2009 4:29 PM (GMT -6)   
I think a second opinion is definitely in order. Remicade has been a godsend for me, but I tried numerous medications and didn't start on Remicade until more than a year after dx. I was told it was that or surgery. You may also want to explore the surgical options and avoid medications altogether. Especially if she may be prescribed Prednisone, I believe that Pred can cause a lot of issues in children if they end up being on it for awhile, and with UC a "quick course of Pred" can turn out to be quite long as it's possible to become steroid dependent. I ended up being on it for two years. The surgery is called jpouch and there is a ton of info online. Outcomes are generally very good and it seems to me that people only regret not doing it sooner.

If Remicade stops working for me I am having the surgery. I figure it's down the road for me, but the Remi is buying me some time as it's not a good time to be recuperating for a couple of months.

Good luck, keep us posted!

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

13 Remicade infusions: 1st: 7/21/07; most recent: 1/21/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/4/2009 7:55 PM (GMT -6)   
Yeah, sounds like he is skipping to the end of the medication script most of the other GI's follow.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


mommypoopoo
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/5/2009 12:50 PM (GMT -6)   
Well, my daughter had her appointment today with the peds GI....and he basically said that he wants to "kick it out of there." He is evidently a big fan of starting stronger treatments from the start. He gave me a prescription for Asacol and said i could think about the Remicade for now. He says he'll start the steroids if she gets really bad. He also wants her on Zinc, adult Multivitamin, 1000mg folic acid, B12, and vitamin C. Thank you everyone for your support...this really has come in handy, i feel i have few people i can talk to.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/5/2009 3:01 PM (GMT -6)   

Ah, I've heard of doctors wanting to start at stronger meds, and then taper off to baseline meds. Remicade actually heals the lining of the colon and prohibits the body from attacking it again. I'd rather take Remicade than steroids (which is what I actually did) since one can become steroid dependent and those side effects scare me more than the Remi.

Keep us posted on how your daughter is doing!

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