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Crohn's Disease Forum » Your Story » 12y/o son just diagnosed...Remicade?


06-24-2015, 09:16 AM   #1
Grady'sMom
 
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12y/o son just diagnosed...Remicade?

Hello! My 12 year old son was just diagnosed with crohn's. About 6 months ago we noticed some weight loss and took him to the pediatrician. All the blood work came back normal. Then in April he had a perianal abscess with a fistula. Biopsies, more bloodwork (now abnormal), MRE, and colonoscopy have all confirmed crohn's.

The GI is now suggesting we start on Remicade as a first course of treatment. I'm just here getting some information and support.
Thanks for letting me share.
Teresa
06-24-2015, 10:48 AM   #2
Meredith17
 
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Hi Teresa.

My son was also diagnosed around that same age - also after weight loss and perianal abscess and fistula. He did have surgery for the abscess / fistula. His Crohn's was attacked with Pentasa, Mercaptapurine, prednisone, Nexium and hyoscyamine. The prednisone was key for my son in bringing about remission. He did not have to do Remicade infusions. He has maintained remission with Pentasa, Mercaptapurine and Nexium alone. He gets occasional perianal abscesses, however they've been treated successfully with antiobiotics alone. He's 19 now and has had no major issues.

I also have Crohn's. When I was first diagnosed at age 26, my first meds were Asacol, Mercaptapurine, prednisone and Nexium. Those alone did not get my inflammation under control, so then my doctor added Remicade infusions. So, for me, prednisone and Remicade were both key in bringing on my remission.

I know what a hard road this is as a parent and as a patient. It's hard to say if Remicade is right for your son. I would lean towards trying prednisone, mercaptapurine, pentasa first and then on to Remicade afterwards if those meds don't start getting the inflammation under control. I say this because all of my research over the years has led me to idea that biologics (Remicade included) are to be used after first trying the other medications. But, all of us Crohnie's cases are sooooo different, and we all respond uniquely to each treatment. There's no real right or wrong answer.

Hang in there! This is a long journey. I hope all goes well in obtaining remission for your son!! Keep us updated.
06-24-2015, 02:08 PM   #3
Grady'sMom
 
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Thank you for taking the time to post! It is so hard to know what to do. We are supposed to call the doctor with our thoughts on the remicade tomorrow. I get the impression that he wants to treat him asap. There was talk of "maximizing his growth potential" since he hasn't started puberty yet. Most of the information I have read about the drug is that it is for severe cases which haven't responded to other therapies. I'm not sure he fits that description. Is this is a "nip it in the bud" kind of drug? It seems so aggressive. This is so new I don't even know what questions to Ask or what alternatives are out there. Any advice is appreciated.
06-24-2015, 04:27 PM   #4
Clash
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A lot of GIs do now follow the top down approach due to studies that have shown that the introduction obiologics shortly after dx can lower the risk for future surgeries. Also, as your GI suggested introducing biologics early can give kids the best opportunity for full growth potential.

There are a number of parents that have kids on remicade here on the forum. My son went straight to remicade right after surgery and we saw really good results symptom wise.
I'm going to tag some others Mr chicken, crohninct, maya142. There are other that will probably be along as well.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-24-2015, 05:51 PM   #5
Mr chicken
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Please check out our parents section

http://www.crohnsforum.com/forumdisplay.php?f=49

You will meet lots of parents there who tons of exp with all different meds

My kiddo was dx at age 7
We tried bottom up ( pentasa then 6-mp then Mtx )
After a year of no improvement and my kid still sick the GI finally suggested we try remicade .
7 weeks after his first infusion I had my kid back
Wasting time on the lower meds increases the amount of not so normal life
And increases risk of surgery later
Kids tend to have a much more aggressive disease course than adults
The disease spreads and changes over the first ten years after dx for kids
Most go from inflammatory to stricturing/fistulizing
Add in surgery rate for kids is 75% within the first 5 years.
Risks with biologics IMO is way less than 6-mp/Aza which has a higher cancer rate

If you are naive to immunosuppresants and start with biologics you don't have the t-cell lymphoma risk you get when the two are combined OR you have any past history of 6-mp/Aza

Knowing what I know now (DS is 11 and been on biologics for 3+ years)
I would have pushed for those first

Recap pentasa did nothing at all
6-mp did next to nothing and went to his liver
Mtx by itself wasn't enough and he got vasculitis
Finally remicade let him swim competively and enjoy the third grade
So next extra colds etc for all of 3, 4, and 5 th grade

We only added Mtx due to juvenile spondyloarthritis associated with Ibd
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Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
06-24-2015, 05:52 PM   #6
Mr chicken
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http://www.crohnsforum.com/showthread.php?t=72753

Recent discussion on remicade in parents section
06-26-2015, 03:28 PM   #7
David
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Welcome to the community. I can't imagine how difficult all of this is for you

Remicade is indeed aggressive and I understand your concerns. However, that your son has fistulizing Crohn's which is very serious in my opinion warrants the use of Remicade. It's what I'd do if our roles were reversed and I hate medications.
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06-30-2015, 06:10 AM   #8
Grady'sMom
 
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Thanks for all the input. We still don't know which direction to go. I think if my son were feeling sick, we would be much more willing to go right to the Remicade. But right now he has no stomach aches, is eating well (although not as much as I'd like him to for weight gain), and has energy. He does have diarrhea, which only started after he began on the flagyl (he's on that and Asacol. He does have a small open abscess (that's not causing any pain) which is our greatest concern, and I know the reason the Doc wants to start the Remi right away.

I don't want to "waste" any time starting on lower medications, but at the same time, I'm still hesitant to jump in with the Remicade because he's feeling so good. I want to want him to get it, (if that makes any sense) but I just don't. Help me sort this out in my head!
06-30-2015, 07:06 AM   #9
David
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I absolutely understand your being on the fence on this one.

However, fistulizing Crohn's disease is very serious. I get that he's feeling pretty good right now, but there IS active inflammation doing its best to create scarring which leads to strictures which leads to other terrible issues in addition to the fistulas.

I have a 19 month old who is sick right now and I'm agonizing about whether he should take antibiotics. So I can't imagine how hard your decision is. It's certainly easier for me to make the call from this side of the keyboard. But as someone who has literally read thousands and thousands of accounts of Crohn's disease and has a deep understanding of the seriousness of what you son is experiencing, I still say go for the Remicade.
07-03-2015, 05:13 PM   #10
Sethsmom
 
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My son and I are new to this support group but not to Crohns. He is 14years old and has had Crohns for just over a year now. We have tried so so many different medications excluding Asacol. Even though he was seeing a peds GI doctor he was not getting the help he needed. We was spending a lot of time in the ER.

I started taking him to Cincinnati Children's Hospital in May of this year. I can honestly say they are a blessing from God. I love the ideal that he has several doctor on his team. It's not juss one dr with one opinion telling you want you should do for your child.I was like you. I was so afraid of letting him start Remicade but everything we had tried was a failure. I was tired of seeing him cry with stomach pain and him not being able to eat. He was so so thin. He started Remicade June 1of this year and he is doing wonderful. He has gained weight and has been pain free since.I know that Remicade is a terrifying medicine cause I struggled letting them start him on it but now that was the best decision I could have ever made for him.

I wish you and your child luck and I hope that you can find what is best for you all!!
07-07-2015, 12:10 AM   #11
David
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Thanks for chiming in Sethsmom. I hope to see you become a part of our Parents of Kids forum.
07-07-2015, 07:48 AM   #12
Grady'sMom
 
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Thanks to all of you! We had a follow up apt with the surgeon who first saw my son and he echoed the gi doc's recommendation of the Remicade. I wish my gut would catch up with my head about this medication!
07-07-2015, 11:28 AM   #13
David
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It may never catch up. Logically, you know this is very likely the best treatment option available to him. But emotionally and on an instinctual level, the idea of giving him something like Remicade is a terrible feeling.
07-08-2015, 11:39 AM   #14
Mr chicken
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Yeah that*^^^
None of the meds give a warm and fuzzy feeling
With remicade I thought I would be physically ill watching him get an infusion ( he was only 8 at the time )
Once I saw the magic that med did versus all the other meds we had tried for him
He was a "normal " kid again
Coaches and teachers would comment on how well he looked etc after an infusion
They also knew when it was almost time for the next infusion
Smiling happy growing kids are what life's all about and sometimes the scary meds work miracles and get you back there quickly .

Good luck
07-11-2015, 05:11 AM   #15
Grady'sMom
 
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I just wanted to follow up to let you know that my son got his first infusion of Remicade yesterday. My got caught up with my brain when I saw him this past Monday through Wednesday in excruciating stomach pain, which she had not had before. When I saw him in the state and saw a glimpse of my future without this drug, the decision was made. The actual infusion was no big deal at all and he did totally fine. I am looking forward to seeing what kind of magic this works on his fistula. I'm hoping for miracles.

Thank you all again for the responses and support.
Grady'sMom
07-16-2015, 09:19 PM   #16
David
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I'm glad the infusion went well! I pray that remicade is a miracle drug for them Please keep us updated on the progress!

*hugs*
07-16-2015, 09:52 PM   #17
Mr chicken
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Glad it went well
The first infusion is the hardest on the parent
It. Gets a little easier after that
Seeing the magic makes it all better
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